JOINT COMMITTEE ON EDUCATION AND SCIENCE debate

Autism: Presentations.

Chairman

I welcome everybody to this joint meeting of the Joint Committee on Health and Children and the Joint Committee of Education and Science. The committees meet jointly this morning to hear a number of presentations from three voluntary bodies and from two Departments. We have agreed a strict timetable because of the number of speakers and the possible breadth of the discussion. Presentations will be made on behalf of the Irish Autism Alliance, the Irish Society for Autism, the Asperger Syndrome Association of Ireland and the Departments of Health and Children and Education and Science on progress made in implementing the recommendations contained in the Report of the Task Force on Autism of October 2001.

On behalf of members of the Joint Committee on Education and Science and members of the Joint Committee on Health and Children, I welcome the representatives of each of the organisations - Mr. Marc De Salvo and Ms KathySinnott from Irish Autism Alliance, Mr. PatMatthews and Mr. Denis Sexton from the Irish Society for Autism, Ms Ornaigh Malone and Mr. Des McKernan from the Asperger Syndrome Association of Ireland, Mr. Donal Devitt and Ms Frances Fletcher from the Department of Health and Children and Mr. Peter Baldwin and Mr. Liam Hughes from the Department of Education and Science.

The representatives are here to discuss with the members of the two committees the progress that has been made on implementing the recommendations in the report of the task force, which is a rather large document. I welcome the representatives of the various organisations who are in the public gallery.

As members will be aware, a joint meeting of two committees is somewhat unusual. Both committees have some responsibility in this area and have to report in relation to how their respective Departments are dealing with it. This joint meeting allows the members to explore the educational and health aspects of the recommendations in the report, to examine how they are inter-linked and to establish what kind of progress is being made.

My colleague, Deputy Batt O'Keeffe, would also like to say a word of welcome.

Deputy B. O’Keeffe

On behalf of the Joint Committee on Health and Children, I welcome everybody to this meeting. This joint meeting of the committees signals our commitment to tackling the problems in a much more integrated way. Members of both committees will hear your concerns and later we will be able to question representatives of the Department of Education and Science and the Department of Health and Children on what they consider are the priority issues and how they have addressed them to date. I hope today's meeting will be productive for all of us and that all of us will see our roles much more clearly in terms of what we can do individually and as a team to enhance the lives of all of those people who suffer from autism.

Chairman

Members were circulated with the proposed timetable which we agreed, effectively, last week and I will have to ensure we work within it. The first part of the meeting will be taken up with presentations of ten minutes each from each of the three groups and from the two Departments. I will have to ask the organisations to stick rigidly to that ten minute time limit. Once the presentations have been completed, I propose that we will break for 30 minutes and return for a question and answer session. If we are lucky that will co-incide with the start of the Order of Business and cover a vote, if there is one.

I draw the attention of the representatives to the fact that members of the committees have absolute privilege but the same privilege does not extend to witnesses appearing before the committees. Members are reminded of the long-standing parliamentary practice to the effect that members should not comment on, criticise, or make charges against a person outside the House or an official by name or in such a way as to make him or her identifiable. I call on Mr. Marc De Salvo, information officer, and Ms Kathy Sinnott from the Irish Autism Alliance to make their presentation.

Mr. Marc De Salvo

I would like to begin by expressing my appreciation for the opportunity to present our organisation's views to both committees. Like more things, in regard to diagnosis and assessment, the first and most important issue for parents is that there would be an immediate response when a concern has been raised over the development of their child. My wife and I were advised to adopt a wait and see approach for 12 months when we first raised concerns over our daughter Jessica's development. I later learned that the professionals at that time had already queried a diagnosis with our daughter. I subsequently learned they did so because of the age of my wife and myself; they felt we were so young that we could not handle such terrible news. This practice must stop if we are ever to get early intervention in place.

While full diagnosis may take some time, this should not preclude appropriate intervention when a developmental delay has been clearly identified. There is also a need for a clear diagnosis and assessment route for the parents to follow to stop what I have outlined happening. It will be necessary to have specialised assessment facilities, preferably autism specific, but it is absolutely vital that these facilities are fully independent of any service provider. In other words, the assessment process must not be influenced by anything other than the assessed need of the child or adult. The facilities will need to clearly specify what educational, therapeutic and medical needs there are so that the person being assessed is given the best possible chance of achieving his or her full potential in society.

There should be one assessment of need. By this, I mean there should not be separate education and health assessments. I do not understand how anyone can say where a health assessment ends and an educational assessment begins, particularly when one considers that the health issues often have a major influence on the educational requirements. However, one way or another, where there are two separate assessments there will be cracks through which many people will fall. This assessment must be followed by a detailed statement of needs. It must reflect any and all developmental delays observed in the person and clearly identify both his or her educational and medical needs. At all times parents must be involved and consulted during this process.

Those doing the assessment and producing the statement of needs should have a thorough knowledge of the main interventions currently available. It is surely self-evident that people cannot make an appropriate decision based upon interventions unless they are familiar with the currently accepted practice. These assessments should happen quickly if we are to achieve early intervention, as we know this is essential with autism. The assessment of need and statement of needs must produce an action plan for the person. This action plan must cover both health and education aspects of the person's need and must clearly identify who and which Department is responsible for meeting that person's need.

It is imperative that all elements of the plan are co-ordinated and delivered effectively. It is our experience that such co-ordination is rarely forthcoming between the two or more Departments. It is the responsibility of the Government to ensure effective cross-departmental co-operation in order to provide seamless service delivery to those who need it most. Consequently, it is our opinion that the delivery of such services should rest under the control of an individual or unit. Incidentally, it does not help that health is administered on a regional basis throughout health boards while education is run on a national basis. This action plan must be immediately set in train once it has been identified.

In regard to the concept of funding for services that should be attached to the client, it is important that the necessary funding for the statement of needs would be attached to the person with autism. This means that schools and any other services would know that taking on responsibility for a child with autism automatically means that the funding has been made available for the correct services. Under the current system, when parents receive a diagnosis, they must then start the long trek, as I have done, of travelling from school to school in an attempt to gain a place for their child. The process can lead to enormous pressure being put on parents to solve what, effectively, is the responsibility of Departments, particularly those represented here today. This should not be the case and parents should not have to suffer in this way. Following the receipt of a statement of needs, there must be a system of consultation with parents which culminates in a service, whether health funded, education funded or joint funded, which is suitable for the child and satisfactory to the parents. Such a service should be subject to annual review to ensure it still meets the needs of the individual.

There should be no waiting lists for an appropriate full-time service as the right to these services has been confirmed under the Constitution and, in the case of adults, under the Education Act 1998. A new special needs grant should be implemented without delay. This grant would enable the appropriate intervention to take place in the home setting until such time as an appropriate placement can be found.

Many people with autism require lifelong support in coping with their disability. Provision should be made for continued appropriate education and health services for those over the age of 18 years. This means, once again, that both the Department of Health and Children and the Department of Education and Science should have a statutory duty to provide services based on the individual's continuing need. It should also be clear that, unlike certain suggestions in the last education for people with disabilities Bill, other agencies such as FÁS should be answerable and responsible to whichever Department is taking responsibility for the education and care of people over 18 with autism.

Chairman

Half of the time allocated to the alliance has now expired.

Mr. De Salvo

Thank you. At present, taking this route means that services referred to earlier are either not available or accessed with difficulty. The result is that parents must often source all services in a piecemeal fashion from the two Departments.

I wish to express my appreciation to the joint committees for the opportunity to speak here. We are aware that much has been done to try and resolve the huge problems which exist in catering for all people with disabilities. However, the fact that we are meeting here today is an indication that there is more to be done.

Ms Kathy Sinnott

The task force on autism produced a good report but it was incomplete. The reason is that it had little or no input from the Department of Health and Children. The areas that are missing or understated are all health related and they have direct relevance to half the people at this meeting. One cannot educate people with autism or autistic spectrum disorders without an input from health services.

The services required from the Department of Health and Children do not differ from the services required from the Department of Education and Science in their mandatory constitutional nature. This comes from the legal definition in Ireland of education which was accepted in March 2001 in the Supreme Court. The definition is that education consists in giving each child such service, instruction and teaching as would enable him to make the best possible use of his inherent and potential capacities, physical, mental and moral, however limited these capacities might be. Besides teaching, it is specified that this includes ancillary services like therapy, health care and medical treatment where these are necessary for learning. That is the legally accepted definition in this country.

With regard to an autistic spectrum disorder, many of the ancillary services which fall under the Department of Health and Children are integral and essential for learning. They are guaranteed under the Constitution for people under 18 years of age and the Supreme Court specified that under the Education Act they are guaranteed to people over 18 years. My son, at 25 years, is receiving his therapy, teaching, health care and medical needs under the Education Act 1998. He is the only one in the country getting that and that is not fair. When adults go to the Minister for Education and Science, they are told it has nothing to do him and that they must go to the Minister for Health and Children. That is not true. The Department should re-read the Supreme Court judgment.

Autism is first and foremost a medical condition that directly affects the brain with regard to sensory processing, motor planning, regulation, communication, etc. It causes difficulties in intellectual and emotional communication and socialisation. It causes pain and fear. One cannot learn without the health care input. In the forthcoming education for persons with disabilities Bill, one must realise that whereas it may be the Minister for Education and Science's responsibility to see that education is regulated, it is the responsibility of every relevant Department to implement and fund the education.

Autistic children are sick. They have an auto immune disease. Before they have any educational needs they are sick children and there is no medical response to their illness in this country. We spoke to the Minister, Deputy Martin, when he was first appointed Minister for Health and Children. We had already spoken about this with the previous Minister, Deputy Cowen. We got a promise of a hospital based centre of excellence which was to be provided in Cork University Hospital. We spoke to the professors involved. It was quite advanced for the preliminary stages but it has now disappeared. I got a sighting of this proposal about one year ago in Hawkins House and have not seen it since. Perhaps the committee members might find out what has happened to the centre of excellence. There are many cutbacks in the health budget but it is unconscionable that there is no treatment for incredibly sick children and adults.

On a day to day basis the health needs in autism are primarily diet, therapy and supplementation. Almost all people in the autistic spectrum need to modify their diets. That requires co-operation. We need dieticians and co-operation in schools and services. We need foods to be available. It is impossible for families to find foods to feed their children.

We presented to the Department of Education and Science a new system called the special needs education grant that could replace many of the existing policies and grants. It would mean an assessment would be made of a certain child and a proposal would be made to meet their needs. That proposal would be implemented by the relevant Department, whether it is therapy, education and so forth. We would like to see that move forward.

Chairman

Mr. Matthews, the executive director, and Mr. Sexton from the Irish Society for Autism will now make their presentation.

Mr. Pat Matthews

I thank the joint committees for the opportunity to make a submission. I will start with a brief outline of the history of autism and how it has been treated by both the health and education Departments. Autism has existed for centuries but it was only in 1943, through the work of Leo Kanner and Professor Asberger in Austria, that it came to prominence. It had been variously regarded as being infantile schizophrenia or an emotional disturbance. The latter had unfortunate consequences because it was under this classification that it was treated by both the Health and Education Departments in Ireland for many years, with disastrous consequences for the children and the families.

The Irish Society for Autism was founded over 30 years ago and has fought for many years for appropriate recognition of autism and the treatment of people with autism. The Department of Health was the first Department to give recognition and this dates back to a report commissioned by Dr. Mulcahy early in the 1990s. The then Eastern Health Board was innovative when, at the end of the 1980s, it split the emotionally disturbed unit it ran in St. Loman's into two. One was in James Connolly Memorial Hospital and the emotionally disturbed children were separated and went to Courthall. That was quite innovative at that stage but was not recognised by the Department of Education. That Department refused to recognise autism as a syndrome requiring separate and specific treatment until well after the report of the special education review committee in 1993, the SERC report.

The recognition of autism as being entitled to autism specific education finally came with the setting up of the Beechpark project in 1995. That was with the collaboration of the Department of Education, the Eastern Health Board and the Irish Society for Autism. The struggle for recognition has always been a problem for parents. The struggle for specific education and treatment has also been a problem.

The two schools set up in Beechpark incorporated the James Connolly School and the Setanta School from Ballyowen Meadows. It was established in 1995 in consultation with the Irish Society for Autism. It was to be a testing ground for teaching methodologies and investigating autism. The campus was to house a central diagnostic and assessment centre. That is what is being called for again in the task force report. The blueprint already existed. A discussion document was sent to each health board in 2000 based on the successes of the early years of Beechpark. Unfortunately, Beechpark lacked funding, enthusiasm and the drive which such a project richly deserved. It was a good pilot project which was to support the development of classrooms and to have an outreach team. However, it was left under-financed and under-resourced and it was doomed to failure. Unfortunately, Beechpark has not achieved what it set out to achieve.

There is an urgent need to provide support professionals, such as speech, language and occupational therapists, physical education and music education. The holistic approach to the treatment of children with autism has been neglected. The number of educational psychologists are too few and will have to be increased dramatically. The health professionals and those with a knowledge of autism in health board areas are few and far between.

The report of the task force on autism is an excellent document which deals with every aspect of the problem. The recommendations in chapter 11 spell out exactly what the committee should be doing today. The inter-departmental co-ordinating committee, the Department of Education and Science and the Department of Health and Children should identify and ensure delivery of a range of ASD services and secure sufficiency of staffing at local and national level to meet the expectant needs of persons with ASD in Ireland. Speech therapists and other support services, as required, should be made available in schools and other educational settings by the Department of Education and Science. The Department of Health and Children should implement the initiatives identified in the report of the expert group on allied health professionals. We do not have to look much further than the task force. As Ms Sinnott rightly said earlier, the input from the Department of Health and Children into the task force was minimal.

It is important to start with the basic points. Local committees, which are co-ordinated by health board co-ordinators, and the proposed Department of Education and Science special education group must be established to secure smooth management and administration of ASD health and education services. The specialised services required by children with autism are a combination of health and education. In April 2001 the Minister for Education and Science promised that 128 educational psychologists would be in place by December 2001. He said that number would reach 200 in a couple of years. When I asked parents if they had met the educational psychologists, I did not receive one affirmative response.

It was stated that special classes on the Beechpark outreach model must be made available throughout the country and must not be affected by geographic factors. We asked for every health board to have a facility like Beechpark. We asked that three facilities like Beechpark should be provided following the break-up of the old Eastern Health Board. We wanted one in the Northern Area Health Board, one in the East Coast Area Health Board and the one in Beechpark in the South-Western Area Health Board to be expanded and enhanced. I do not believe there is a plan in place to meet the needs of these children.

Populations are growing in every country of the world, including in Ireland. There has been a threefold increase since the last study was done in Ireland in 1996. There appears to have been a threefold increase in autism in that short period, but there has not been a threefold increase in the services for children with autism. There are not three times as many speech therapists as there should be. I was more optimistic five years ago that we would meet the problems head-on and combat autism.

The report of the task force is excellent, but we are losing out. The budgeting for the future must be monitored and adjusted appropriately as there is a definite increase. We do not need to look any further than that. Within the spectrum, there is a vast range of ability and that requires different levels of educational and social provision. Each child with autism is an individual. Each child's needs are different and the methodologies used for each child may be different. It is not simple; it is a complex disability which deserves a complex response.

The children in Beechpark and some of the outreach schools are now reaching 16 years of age and over. There is no plan for them to continue their education or to continue in a form of educational establishment. When they reach 18 years of age, they will go home to ageing parents who do not have support. That is the reason a plan must be in place to meet the emerging needs of these children as they reach adulthood. An adult needs continuing education.

The task force mentions the need for North-South co-operation following the Good Friday Agreement. I am glad that part of the Agreement is going well. The joint committee which was set up produced a CD-ROM called "A Teacher's Tool Kit" which, unfortunately, is lying under a desk somewhere at present and is not being distributed. I am disappointed that more than 9,000 valuable teachers' tool kits are waiting to be distributed in Ireland after a year and a half's work.

Vulnerable people have rights under the United Nations charter and the European charter. We have spelled out in the task force report what is required. There are too many reports at present. It is time for action. It is no longer good enough that children with autism must wait for services while the Department of Education and Science and the Department of Health and Children procrastinate over respective responsibilities. The Department of Education and Science and the Department of Health and Children must jointly address the needs of children with ASD and must start to implement the recommendations of the task force.

Chairman

I thank Mr. Matthews for that presentation. I welcome Ms Ornaigh Malone, development officer, and Mr. Des McKernan, honorary secretary of the Asperger Syndrome Association of Ireland.

Ms Ornaigh Malone

Some of the members may have had the opportunity to look at our website, but I am not sure if all members know what is Asperger Syndrome. I will give the committee a brief description.

Asperger Syndrome is a developmental disability which is closely related to autism. It is a condition which primarily affects the way a person communicates and relates to others. It is estimated that there are nine times as many men affected as women in Ireland. Our figures estimate that there are as many as 10,000 people living with the condition. Although individuals with this condition usually have normal or even above average intelligence, many have extremely poor social and communication skills. A number of traits of the condition include resistance to change in routine, inability to empathise and an inability to make or maintain eye contact. Many have few, if any, friends and are probably bullied or teased because of their oddity. It is important to note that, while some of the features of the condition, not all of the traits would be present in any individual with Asperger's syndrome and the traits may vary.

Aspire was founded in 1995 in response, like most charities, to the lack of services for people with the condition. When we first established, we operated a telephone help-line to support families who were desperate for other parents to talk to and share ideas and experiences. The association has since evolved. We have an office in Carmichael House, two full-time staff and we continue to run a telephone help-line, but we also run at least two parents' days during the year as well as conferences and events. We try to raise awareness of the condition domestically and internationally and get the latest research to families. Our goal is to help those affected by the condition and their carers.

In 1998 we set up the first primary class for children with Asperger's syndrome in St Peter's School in Walkinstown. A second class hassince been established at St. James's School inFairview. We run a support in employment programme. We have a job coach in Dún Laoghaire who helps young adults with Asperger's syndrome to find employment and there is a two year training programme in Ranelagh for young adults. Last month we wrapped up the first year of our educating children with special needs conference for teachers and we also finished a one-off social skills programme for parents. We could not accommodate the children who needed social skills training.

There are over 100 recommendations on Asperger's syndrome in the task force's report, but we just picked out four which are the most attainable for us at the moment. The first makes reference to particular attention being needed to providing support systems for students with Asperger's syndrome. In practice, we have learned that, although children need support, there is an embargo on hiring resource teachers or special needs classroom assistants in schools where none already exist. We have heard this from several parents who were informed that their children need support in the classroom but are not receiving it. Without the support, one can imagine the child becoming increasingly frustrated, which spreads to teachers and classmates and the child is eventually sent home to an already distressed family.

The second part of that statement reads: "This support will increase the likelihood of retaining student with Asperger's syndrome at second level." We estimate that there is a 50% drop-out at second level of children with Asperger's syndrome. We would say that is due to the stress of entering second level because the children receive no support. They have different teachers and classes, bells ring and so on. The children go home, there is no support from the school at home, no phone calls, no interest and no one dropping by. That is the case with the Department of Health and Children and the Department of Education and Science. These children, who are now young adults, are at home in their teens and into their 20s and there is no hope for the families. The statement also refers to "students with Asperger's syndrome at second level", yet there is no class in Ireland for children with Asperger's syndrome at second level. We have been trying to set up a class. Last year, we met with representatives from the Department of Education and Science and other groups to try and set up this class. We were told it was going to get the go ahead for September 2003, but last month we were informed that the project was currently on amber.

The third recommendation is that support in employment schemes be developed on a regional basis. We currently run a support in employment programme. We have a job coach whose salary is funded by FÁS and the remainder of the administrative expenses are funded by Aspire. To date, we do not know if we can continue to run that programme because we have not heard from FÁS as to whether we will be receiving funding for the salary for the rest of the year. In terms of replicating the programme, it is probably not going to happen any time soon.

The final recommendation was that sheltered housing and supported or semi-supported accommodation be provided. In 1998 Aspire purchased a house in south County Dublin with the purpose of being the first residential unit for young adults with Asperger's syndrome. When we purchased the house, we were concerned as to how we would set the criteria for eligibility, how we would hire the full-time staff to care for these people but we have not managed to raise any funding for the refurbishments of the house, therefore the house has lain empty since then, which is unfortunate.

We have come across some differences in the theory the statutory bodies maintain, the way the system works and the reality of what we hear every day on the phones. There still seems to be a lack of awareness among medical professionals. Because of this, diagnosis takes years, parents are bounced around from psychologist to psychiatrist, who simply do not understand the condition or have never heard of it. They are looking at three years in some cases to get a diagnosis and, even then, the support services their diagnosis recommends involve waiting lists of up to two years and in places like Donegal the services are non-existent.

We have also encountered discrimination against children with a diagnosis of Asperger's syndrome. One woman was receiving speech and language therapy for her child and did not have a diagnosis. When she received a diagnosis, she was told she was no longer entitled to speech and language therapy for her child. This has lead to psychologists and psychiatrists giving inconclusive reports, which means the children are not entitled to any additional services, but any services they may already be receiving can continue.

There is no support at home. Families are desperately distressed. Children are sent home from school, suspended or expelled and are left at home, in many cases for years. In 2000 we decided to set up a social skills training course. We polled our membership to establish the level of interest. Some of the replies we received were from mothers who were in tears because they could not cope with their children who were at home. One response read:

My six year old son is a danger to me and to our other children. There is no social worker for us because our case is not serious enough. Social services say there are no facilities available. Can you please help us?

Another response read:

This programme is urgently needed and we congratulate you on your efforts to implement it. We are at a loss and worried as to what the future holds for this young man.

Another still reads, "We live in the mid-west and would like to be able to help our son as services here are non-existent." The final response reads, "My son is in college. He has no friends, no summer job, no relationships, no hope and no future."

Chairman

I thank Ms Malone and Aspire. I welcome Mr. Donal Devitt, Assistant Secretary and Mrs. Frances Fletcher, assistant principal, from the Department of Health and Children.

Mr. Donal Devitt

I will make the presentation.

I welcome the opportunity to address this joint meeting of the two committees. The Department of Health and Children welcomes the establishment of the task force on autism and the subsequent publication of the recommendations. The overall area of special needs is complex, given the range of disabilities presented and the individual needs of each child. The recommendations contained in the report of the task force add further perspective to the process of planning and delivery of services to persons with autistic spectrum disorders.

Before I deal in a more specific way with a number of recommendations made by the task force, I will outline some of the main initiatives which the Department of Health and Children has taken in recent years. There has been a very significant investment in support services for people with physical, sensory or intellectual disability and those with autism. Since 1997 an additional sum of approximately €555 million has been invested in these services, of which almost €327 million was allocated specifically to services for persons with autism and those with an intellectual disability. Between 2000 and 2002, for example, this additional funding enabled a range of new services to be put in place. These included 900 new residential places, approximately 380 new respite places and approximately 2,000 new day places. These are spread throughout the country.

In addition, we calculated that over €15 million has been invested in health related specific support services for children with autism and those with an intellectual disability. These include diagnostic and assessment services, early intervention, home support and outreach support to children of school going age. While this level of investment has undoubtedly made a very significant impact on the level of service provision, it is fully accepted by the Minister, the Minister of State and the Department that a further sustained level of investment is needed if we are to provide the level of support which has been identified as required to meet the needs of people with disabilities.

However, in addition to resources, a number of other factors, which have been touched on by earlier speakers must also be in place to ensure that there will be a range of quality and effective services designed to meet individual needs. On the question of general structural policy, the philosophy of the Department of Health and Children, which should underpin all planing and delivery of health and social services to people with disabilities, including those with autism spectrum disorders, is that people with disabilities should be given the opportunity to live as full and independent a life as possible, to live with their families and be part of their local communities for as long as possible. The current policies are referred to in the health strategy, Equality and Fairness, which was published in November 2001, and Government policy generally relating to the mainstream of services for people with disabilities.

In the area of autism, the task force recommended that a range of approaches and therapies should be available to meet the needs of this population group. The Department of Health and Children and the health boards are in agreement with it. However, the policy must be underpinned by appropriate structures which facilitate access to, and delivery of, support services. As part of the planning structures already in place, health boards have been working at regional and local level with families of persons with autism and service providers to identify needs and plan responses which will meet them.

My hand-out refers to the forthcoming education for persons with disabilities Bill, which the Government is committed to publishing in the coming weeks. The Bill will deal with some of the important structural issues and problematic areas set out in the task force report. It will include the question of improved co-ordination at regional level between the education and health services; the assessment of need process; the establishment of the special national educational council; the development of individual education plans and the provision of an appeals process. These are some of the more important aspects of the proposed legislation. These provisions will assist in developing more formal links and structures between the educational and health services at local level.

At national level, the inter-departmental committee of the Department of Education and Science and the Department of Health and Children has agreed a number of dates for a series of meetings over the coming months. We propose to meet with all the representative groups in the area of disability, including those represented here today.

The task force also recommended that a database be developed which will provide accurate information in relation to the number of persons with autism and their needs. While some persons with autism who also have an intellectual disability are included in the national intellectual disability database, it does not contain information on this population as a whole. While the data base provides information in relation to the level of services being provided and current and future needs, it does not identify persons with specific disabilities, such as Down's syndrome or autism. Its principal role is its use as a planning or monitoring instrument. Initial work was carried out in 2002 on the development of an information system which would give a level of information on the needs of persons with autism similar to that which is already available from the national intellectual disability database. This work is being continued during this year, with consultation taking place with the health boards' services providers and persons with autism and their families. The Department of Health and Children will also work closely with the Department of Education and Science in relation to the information requirements of the proposed new national special educational council.

With regard to the recommendations in the task force regarding a national Asperger's syndrome high functioning autism awareness campaign aimed at teachers, parents and health professionals, a process is already under way to heighten awareness and knowledge of the needs of this group. I will return to this later.

In the past few years, there has been a very significant investment in services, including early services. For example, the health boards are in the process of developing regional diagnostic assessment and support teams. These are at different stages of development in the different health board areas. The availability of these teams, together with input from other areas of expertise, will facilitate a move towards more uniformity in relation to diagnostic and assessment services in particular.

The task force places particular emphasis on the development of a range of early childhood services, including pre-school services. The health services do not have legal responsibility for the provision of pre-school services for children, however, health boards and specialist agencies in the health field have over the years developed some specialist pre-school services for children with disabilities, including to facilitate, where possible in certain circumstances, children with disabilities or those from disadvantaged backgrounds in accessing community and private pre-school services. The development of policy in relation to such services will, I understand, be a matter for the Centre for Early Childhood Development and Education and the new national special education council. The Department of Health and Children, the health boards and the specialist agencies will provide whatever possible assistance they can in this matter.

The question of staff recruitment and retention in the allied professions is dealt with in some detail in the task force report and impacts greatly on the health and social services. As we see it, the biggest single difficulty in providing support services to people with disabilities and other areas of services is the shortage of certain professionals, such as speech and language therapists, occupational therapists, physiotherapists and psychologists. Previous speakers have referred to this aspect.

Chairman

Mr. Devitt, your time allocation has expired. Perhaps you might conclude.

Mr. Devitt

The heart of the problems with the services were examined by Peter Bacon in his report on the current and future supply and demand conditions in the labour market for certain professional therapists. It was published in June 2001 and its main recommendation was an increase of over 150% in occupational therapists and a four-fold increase in speech and language therapists. The remaining part of my hand-out provides the detail on that. All the recommendations are being implemented. The training places are being put in place. The bidding process in the universities has taken place. They are mainly broken up between the University of Limerick, NUI Cork and NUI Galway.

Apart from planning for the future and ensuring that we have sufficient training people coming on stream, the numbers employed in the health services have increased in these areas. In occupational therapy, for instance, in 1999 there were 371 employed. Last year there were 642 employed. In the speech and language therapy area in 1999 there were 345 employed and the numbers employed last year were 460, which gave us an increase of 33. Notwithstanding the requirements for the future and the new training places, there is already progress on the ground. However there are difficulties and it is the biggest single difficulty as we would see it, in ensuring appropriate services from the health point of view.

Chairman

I welcome Mr. Peter Baldwin, assistant secretary, and Mr. Liam Hughes, principal officer, Department of Education and Science, and ask them to make their presentation.

Mr. Peter Baldwin

I thank the Chairmen and members of the Oireachtas joint committees for their kind invitation to us to attend here today. I am joined by my colleagues, Mr. Liam Hughes, principal officer, special education section, Department of Education and Science in Athlone, and in the public gallery, Mr. Gabriel Harrison, Assistant Chief Inspector in the Department with responsibility for areas related to special education and Ms Lee MacCurtain, Acting Director of the National Education Psychological Service. Following a re-organisation of duties at principal level in the Department some months ago, Mr. Hughes replaced Mr. Liam Kilroy who had been principal officer of the special education section for many years. Mr.Kilroy made a presentation to the Joint Committee on Education and Science on 16 January last during which special education with specific reference to autism was discussed. At that stage Mr. Kilroy set out the Department's position on this issue. My initial presentation will, therefore, cover some of the ground already covered by Mr. Kilroy. However, given that the two committees are meeting here today perhaps some repetition might be useful.

In general we make educational provision for children with special needs in three ways, in special schools, special classes attached to ordinary schools and in integrated settings, in other words integrated into mainstream classes. The main basis for the provision is the assessed need of the individual child. Our policy is to achieve as much integration as possible commensurate with these needs, taking account of the views of the parents. There are some 108 special schools and more than 500 special classes attached to ordinary schools. Both the special schools and the special classes enjoy lower pupil-teacher ratios - the ratio depending on the particular disability for which the school or class caters. These schools and classes are also supported by the allocation of special needs assistants and by additional capitation funding.

Since the Government decision in October 1998 that all children with special needs in the primary system should receive an automatic response to their needs, there has been significant expansion in provision for children with special needs in integrated settings in ordinary national schools. The significance of this expansion can be gauged from the increase in the numbers of resource teachers which between 1998 and now have gone from approximately 100 to more than 2,300. Similarly, in the case of special needs assistants, the numbers have gone from a low level of 300 to almost 5,000. Over recent years, in line with these developments, we have increased our provision for in-career training for people involved in the education sector in the area of special needs.

The Department provides other services for children with special needs such as a home tuition service, which was designed to cater for children who, because of their disability or illness, were unable to attend school for prolonged periods. In addition, the Department provides special equipment for children with special needs.

Specifically in relation to providing an automatic response to children with autism, there have been a number of developments. First, since 1998, we have created some 115 classes for children with autism in ordinary national schools and special schools. These classes operate with a minimum staffing of one teacher and two special needs assistants for every six children. However, that level can be augmented depending on the needs of the individual children. The Department has also funded a number of stand-alone units which are not integrated into ordinary national schools. Support for these units was committed on a pilot basis. The first one was established in Cork in 1998, known as CABAS Cork, and since then further projects have been established in Kill, County Kildare, in which Marc De Salvo, is involved and in Kilbarrack in Dublin. The Department's inspectorate has been undertaking an inspection of these units as well as of other autism specific provision in the system to inform development of future policy and to assist in the development of best practice.

The report of the task force on autism contains many recommendations which, when implemented, will improve provision for children with autism, high functioning autism and aspergers syndrome and their parents. The principles associated with the task force recommendations would apply to children with other special needs and their parents. It has been widely acknowledged that up until the automatic response decision in 1998, the level of resources applied to special needs was not what it should have been. However, the issue is not just related to resources. There have been huge deficits in the structures for the delivery of special education services and in the wider legislative framework within which such services are delivered.

We in the Department of Education and Science have been aware that our capacity to administratively respond to demands for special education services has been limited in some respects. For this reason, as many Deputies and Senator will be aware, we have decided to establish a national council for special education. The intention is that the council will fulfil a number of functions. First, it will provide advice to the Minister on responses and provision for children with special education needs. In addition, it will provide a local presence on the ground in the form of special education needs organisers who will be charged with drawing together provision for children with special educational needs. The council will also provide a vehicle for dissemination of information and guidance on best practice in relation to responses to special needs. It is intended that, associated with the council, there will be an appellate structure that will enable parents to appeal in relation to responses being made to the special educational needs of their children.

It is intended that the council will initially be established by an order under the Education Act, 1998. This order will come before the Joint Committee on Education and Science. The council will subsequently be catered for in primary legislation when the Education for Persons with Disabilities Bill, to which my colleague from the Department of Health and Children referred, is enacted. That Bill, which in the lifetime of the previous Government had been passed by the Seanad, was not re-introduced immediately by the current Minister. The Minister, Deputy Dempsey, was anxious that a further period of consultation would be facilitated to allow interested groups and parties to make submissions on the Bill. That process is being completed and the Bill is now at an advanced stage of interdepartmental consultation with a view to its early approval by Government and its publication.

It is these more fundamental structural and legislative reforms that we see as being the key to enabling improvement in delivery of services for children with special needs and their parents. It is intended the Education for Persons with Disabilities Bill will cover the range of issues from assessment to responsibility for provision, to appeal processes, individual education plans and so on. In drafting the Bill we are attempting to clarify how the needs of individual children should be responded to by both the education and health services. I know this is the issue the joint committee particularly wants to address today.

Clearly the two Departments, ourselves and the Department of Health and Children, need to work together at the macro level with a view to ensuring that we have "joined up Government" in terms of development of policy on responses for children with special needs and on the resourcing of services for children with special needs. Equally, on the ground at local level, there are issues whereby health boards, service providers and education services can co-operate in an integrated way. Our own capacity to work in an integrated way on the ground locally is very limited at present. It is for this reason we see the National Council for Special Education as being particularly crucial to enable integrated responses to be pulled together at local level. The National Educational Psychological Service has been doing a significant amount of work in terms of producing procedures and structures which will enable close co-operation to take place between NEPS and the health boards. In establishing new structures and putting in place agreed operational protocols, particular regard will have to be had to information dissemination so that parents of children with autism will not have the additional burden of not knowing where to turn to for particular services. We know from talks, for example, with the Autism Alliance that lack of information for parents is a particular gap.

I welcome the opportunity to listen to the views of the voluntary organisation represented here today. We welcome the opportunity to engage with them so that we can take their views on board in the development of services for children with ASD.

Chairman

That completes the presentations. As agreed, we will suspend until 11 a.m. when we will commence with questions and answers.

Sitting suspended at 10.30 a.m. and resumed at 11 a.m.

Chairman

We have agreed the timetable for the questions and answers session. The first five minutes have been allocated to the Government side, Deputies Andrews and Hoctor.

Deputy Andrews

I welcome the five delegations to the committee to discuss this very important issue. We requested this joint meeting because we are seeking that both Departments co-ordinate fully. We have discussed this matter many times during the term of this Dáil.

The Government needs to take a strong lead in this. There is a strong political imperative and strong political will within this committee which is clearly expressed today. This is the beginning of something new. It is my impression, from my reading the task force report, that there is a distinct lack of information for health professionals, educationalists, parents, the media and politicians. We have no database on the prevalence of ASD and no specific methods of teaching in this regard. There is no clear view of what causes ASDs although various theories exist.

The summary of the recommendations in Chapter 17 states that we should plan on the basis of prevalence rates of an international average. One of the websites suggests the prevalence rate is 60 in every 20,000 in the United States whereas the report puts it at 15 in every 20,000 in the younger age groups. Is that prevalence rate accepted by the Department of Health and Children? Is it something for which it is planning? Is there a fear of a huge increase in the prevalence of ASDs in our population? What plans does the Department have to create such a database which is crucial?

The Minister of State at the Department of Health and Children, Deputy Tim O'Malley, referred to the existence of a programme to move people out of inappropriate settings such as psychiatric units and said that the numbers of people in that regard have improved drastically. Having listened to the presentations, things have improved drastically in recent times but there is more to do and the key to this is co-ordination. I would also like to hear comment on third level and continuing education. As a member of a VEC, an education board as compared to a health board, I can say there has not been any discussion on how we will accommodate people with ASDs within our vocational education committee area. It strikes me as unusual that that is the case. As Mr. De Salvo said earlier, it is equally the responsibility of the Departments of Education and Science and Health and Children. Yet, it is only being dealt with by the Department of Health and Children.

Chairman

I am sorry to interrupt the Deputy, but there is another vote in the House. We will suspend the meeting until the vote is finished. I apologise to the delegations but this is something which is outside our control.

Sitting suspended at 11.15 a.m. and resumed at 11.24 a.m.

Deputy Andrews

My last point concerns the communication deficit ASD sufferers have and to compare it with people who suffer blindness or deafness. Many learning aids and a great deal of curriculum material are provided for deaf and blind people. ASD must be elevated to that level of acceptance and must be mainstreamed in the provisions for third level and continuing education. They are similar disabilities. I would like to see development in this area and to hear what the Departments have to say about this.

Deputy Hoctor

I too welcome the interest groups. Why are there two different associations pursuing the interests of people with autism, the Irish Autism Alliance and the Irish Society for Autism? No doubt they have the same interests at heart but perhaps the groups will differentiate their aims.

On the issue of Asperger's syndrome and the group representing ASPIRE, it would be interesting to find out how many of those in the room today are fully briefed on Asperger's syndrome. I am familiar with it as a teacher having had students with it, but it is not something that is well known. How much do we know about it as legislators? Much more information should be made available in order to assist the parents of sufferers in their plight as expressed before us today. There is an information deficit in regard to Asperger's syndrome and autism.

A great deal has been done in making provision but there is more to be done. I have been in the House a year and many of us newly elected Members are working here for the first time. The provision of more information on this would be welcome.

Deputy O. Mitchell

I welcome the groups and the representatives from the Department. I will try to get to the nub of the issue. From all I have heard over the years and from dealings with various groups it seems the problem is that there is no clear line of responsibility. Nobody takes responsibility. Everything is so ad hoc and there is such a dearth of services that people have to fit into whatever service they are able to get rather than getting a service tailored to their needs. This means people are almost always inappropriately placed and almost always carry that mistake through their lives. That is why people fall through the cracks eventually. They may be inappropriately placed at school level when they become teenagers and they drop out of school. There is nobody with responsibility to claw them back into the system and to ensure they are more appropriately placed or that they get whatever supports are needed. If it does not happen then it happens at 18 years of age and they end up being completely inappropriately placed, in psychiatric services where they should never be. It becomes a life-long battle for parents to try and find the appropriate service. What is required is an early assessment followed by a service plan. The critical decision is to decide who is responsible for implementing that plan over the child's life.

The body that should be responsible should be within the Department of Health and Children. I am interested in hearing if the interest groups here agree. The reason I believe that is that despite the many warts of the health service it is used to giving a "cradle to grave" service. Inevitably, it has to be more flexible because of the infinite range of conditions with which it has to deal. On the other hand, education tends to be a far more inflexible service and it is not a "cradle to grave" service. I suggest that the Department of Health and Children should have responsibility for the provision of the education service.

Given the importance of early intervention, I ask the Department of Health and Children how we have arrived at a situation where there has not been a sufficient number of trained therapists. There is a huge under provision of all specialities of therapists. It is unforgivable that the body responsible for planning the training of therapists failed utterly over many years to ensure we have a sufficient number in place. The service has become very deficient as a result.

Deputy Enright

The Minister stated in reply to a parliamentary question that NEPS would ensure that its psychologists were made aware of children with autistic spectrum disorder at school entry level. I ask the Department to state the time frame for ensuring that this is possible. The biggest problem at the early age is that responsibility for pre-school and school age children falls between the two Departments and these children are falling between the two Departments. Will the task force be implemented and what time frame has been allotted to apply the recommendations?

I presume the resources for the provision of pre-school education for children with autism is the responsibility of the Department of Health and Children. Are these children eligible to be provided with language classes when they enter the education system? How frequently during the academic year are children with ASD reviewed by educational psychologists?

There is a difficulty in terms of the assessments being carried out. I know of an instance of one child in my area who was assessed by the Midland Health Board and it was decided he needed 15 hours of resource teaching per week. An assessment by NEPS decided he needed five hours resource teaching per week. The obvious question is what amount does he need and what is he receiving at present? I received a reply to a parliamentary question yesterday which states that he is now receiving extra hours but that is as a result of six months of inquiries.

I was very concerned at the comments made by Ornaigh Malone from ASPIRE in relation to the embargo on a scheme and perhaps the Department could comment. She stated that children with ASD are being refused therapy once diagnosed. I ask a representative of the groups who are here to explain the reference made to attached funding and to expand on family support for children in mainstream schools.

Deputy Cooper-Flynn

I thank the various groups for their presentations. I am a member of the Western Health Board. The presentations suggest that there is a lack of services nationally, particularly a lack of services to the regions. I ask the Department of Health and Children and the Department of Education and Science to highlight what has been done, specifically in the regions, particularly in the western region, to provide these essential services. I reiterate a question asked by Deputy Enright when it seems that services become less once a diagnosis is made. That seems to be an extraordinary situation. While much work has been done by the various Departments and we have come from almost a nil base in 1998, would it not be preferable for one Department alone to deal with this issue?

Deputy Moloney

I thank the groups for their submissions. I am aware that the two Departments are trying to do what they consider to be their best but as a member of the Midland Health Board it is a constant problem dealing with two responsible Departments, two sets of officials and often two slightly contradictory positions. It is difficult for parents and for public representatives who are endeavouring to tackle the issue and provide answers.

The major issue is that of early assessment and where the responsibility lies following the results of the early assessment and that must be resolved or this problem will continue. The submission referred to the increase in the incidence of autism and I ask if there are accurate figures available. It seems that a single assessment is preferred over the suggested separate health and education assessments and I ask for your opinion. Unless there is one group responsible rather than a two-tier approach we will always have difficulties.

Deputy Devins

I find it a little upsetting that the prevalence rate of autism appears to be increasing and I wonder if there are any reasons for this? If we are to plan a service with the recognition that resources are finite, the huge increase in the prevalence rate in California, from 7.5 per 10,000 up to nearly 20 per 10,000 would indicate that we are on the verge of an explosion. Like Deputy Moloney, I ask what the prevalence rate is in Ireland and whether it is foreseeable that the increase that has occurred in the United States will also occur here. It is very important that resources are focused and until the figures are known it is not possible for that to happen.

Chairman

The next time slot is for the Labour Party. Deputy Liz McManus has indicated that she has another commitment and Deputy Jan O'Sullivan will take her place.

Deputy O’Sullivan

I welcome the delegation and apologise on behalf of Deputy McManus who has been detained in the House. I wish to concentrate on the future. The most critical issue is the importance of early intervention and early assessment and the establishment of services across the two Departments as early as possible. Evidence suggests that if that is done, then the chances for the child of getting into the mainstream and leading a good life are there. If early intervention is not achieved then it becomes much more difficult and more costly.

I will concentrate on the promised rights-based legislation, the Disability Bill and the Education for Persons with Disabilities Bill. Kathy Sinnott is present today and the promise of that legislation was made in 2001 immediately following her court case but we are still waiting. There should be a joint assessment of needs - one assessment of needs that starts at the very beginning and gives a "joined-up" approach to the individual child. I ask if the two Departments have agreed to this. There are indications that the education Bill will come first but I do not think that is how the people in the organisations wish it to happen. They want to ensure that there will be one assessment of needs, with general and educational needs assessed together. We want to ensure that it is rights-based and that the child is given the right to whatever services the child requires from the Departments. The provision of services is another related issue. Mr. Devitt stated that there were 900 new residential places. How many of those places are available to persons with autism?

I wish to ask about the embargo on recruitment of extra staff. Is there an embargo on hiring resource and support teachers who are needed for children with autism? Progress has been made particularly on special classes for children where the Department of Education and Science referred to one teacher and two special needs assistants per six children, and also the ABA development. Only those whose parents fought tooth and nail have got that service. Can we hope children in other parts of the country will get that in view of the embargo?

Where is the proposal for the centre of excellence? Why were the 9,000 teacher tool kits not distributed? This issue was raised by the ISA delegation. ASPIRE said the special classes were on amber light. When will those classes be in place? My questions are mainly aimed at the Departments, as they will have responsibility to deliver.

Everybody has given very good presentations. While know what the problems are, we need strong rights-based legislation, not like the two Bills that had to be discarded last year. It is essential that both Bills are prepared in tandem and that there be a co-ordinated approach to the assessment of need that follows the child so that the parents do not have to travel to look for services. Apparently in some cases parents have to go to 20 or 30 schools or different sections in the Department of Health and Children to get the services they need. No parent should have to go through that, particularly the parent of a child with special needs. I appeal to the two Departments and the Department of Justice, Equality and Law Reform, which has responsibility for the Disabilities Bill, but is not represented here today, to ensure this legislation achieves what it should and takes the burden away from parents and allows the children get the service they need.

Deputy Gogarty

I would like to make a number of comments, but time does not allow. There is a 40% shortage of psychologists in the country. In response to a question form my colleague, Deputy Boyle, the Minister of State at the Department of Health and Children, Deputy O'Malley, said: "It is important to bear in mind that the overall budgetary and economic position in 2003 has had important implications for all aspects of public spending." This seems to indicate there will be no increase in the number of psychologists. NEPS will not work properly. There is a 64% shortage in the Eastern Regional Health Authority area. Can any of the representatives from the Department of Health and Children or the Department of Education and Science indicate whether there will be any form of emergency funding, without which many of the recommendations of the report will not be completed?

Ms Sinnott made the point that the ASDs are mainly auto-immune based disorders. Can Ms Sinnott elucidate on the size of this epidemic - for want of a better word - its cause and the financial implications for the country?

On behalf of Deputy Gormley, I have a question about the MMR vaccine. Given Ms Sinnott's expertise in this area, is it her view that the MMR vaccine has contributed to autism spectrum disorders in any way? If that is the case, can she make any recommendations to the Government on the issue?

Deputy O'Sullivan asked when the national centre of excellence would be established. At the last meeting I asked for a schematic outlining recommendations that would be implemented. Could the various groups make three recommendations to be implemented in the current economic climate, which might allow some progress to be made? I am particularly interested in the funding issues and getting the people involved. I am also interested in the overlap between the Departments of Education and Science and Health and Children, bearing in mind that the Department of Education and Science does not have responsibility for people over the age of 18. We have to deal with the situation as it exists. We should also take preventive measures to ensure more young children are not born into the world with ASDs, which is a burden on parents, much as parents love the children.

Deputy Crowe

What progress has been made on the recommendations in the report, which was published in October 2001? What positive developments, if any, have been made since the report was released? One of the speakers mentioned losing optimism, which would be a fair assessment of any of the families to whom one talks on this subject. The special needs grant was mentioned and someone from the Department should respond to that. The interdepartmental ASD working group was supposed to have parental representation. Can a progress report be given to this committee on the workings of that group? One of the speakers mentioned the national council for special education. I have no problem with that provided it is not just another committee.

Constitutional reform needs to be considered. What has the Government done on this? In the Sinnott case, Mr. Justice Barr pointed to weakness in the State's administrative structure and insufficient liaison between Departments of State where a particular problem involves two or more of them. Those are the two big issues on which I would like to get more information from officials of the Departments.

Deputy Cowley

I am glad to be here and to hear the presentations from the coalface, as it were. The people involved have certainly been through the mill. We now have another report joining many others gathering dust. Despite the help that exists at the moment, the groups have starkly highlighted the deficiencies in the system. It is a question of moving on. Everybody agrees these things should be treated holistically, but the reality is that there are different Departments. This affects other issues also. My colleague from the Green Party, referred to preventing people from coming into the world. He may not have meant it to come out like that. I dissociate myself from any sort of——

Deputy Gogarty

On a point of information, I want to ensure people are born as healthy as possible with the influence of chemicals. It has nothing to do with Nazism.

Deputy Cowley

That is fine. I am glad that is sorted. The acid test is how we treat the people who are most vulnerable. We are already bedevilled by lack of resources in this area. The acid test has proven very negative for the Government. Ms Kathy Sinnott has been very involved at the coalface and has worked very hard for people with disability. In the light of her expertise, what does she feel we, doctors, members of the primary care team, district nurses, etc. could do to better help people with autism from the cradle to the grave? Based on her research, what is her projection of how autism and related disorders will affect our population in the future?

Deputy Stanton

I welcome everyone here. We are almost suffering from information overload. The task force was established in October 2000 and has made 180 recommendations. I would like the Department to report on what has happened on each of those recommendations. We have received an overview today but I would like to have more details. The issues mentioned included research, parents as partners, certification, referral, initial assessment, third level, second level and so on. While this report was being compiled, the Department proceeded to purchase a centre in Middletown, County Armagh for Stg. £3 million, with running costs of Stg. £2 million annually. What involvement did parent groups have in that decision? Were they consulted about it? Did the task force assess this and, if so, what was its view on the matter? There is no reference to it in the task force report. Although it involves a major financial outlay, it does not appear to be recommended anywhere. It has not been mentioned or discussed today - that baffles me. Neither was it mentioned on the last occasion. It is an issue which should be clarified.

On the pilot projects, when will a decision be made to end their pilot status and put them on a statutory footing? Dual enrolment is a big problem in situations where children from special schools move into mainstream schools. They can only be enrolled in one school and I believe Mr. Baldwin will be aware of the problems involved. What is being done to sort out this situation? Integration is important, as many people would agree. What does the Department intend to do about this problem and when will it be resolved?

Is there a co-ordinating committee between the two Departments concerned? If so, who are the members, how often has it met and what are its terms of reference? Does it include parents' representatives? I believe this morning's meeting, in joint session, is intended to introduce some degree of co-ordination. Earlier in the meeting, Mr. Devitt stated that the health services were not responsible for the provision of pre-school services for children. Where does that responsibility lie? I understood that health boards were involved in providing that service. Who is responsible? Early intervention is crucially important. What is happening in that area? With your agreement, Chairman, I may come back with further questions at a later stage.

Chairman

Do any other Members have further questions? If not, as many of the questions are for the Department officials, we will start with their responses. Is that agreed? Agreed. We will start with Mr. Baldwin.

Mr. Baldwin

Some of the questions are interrelated. There were a number of questions with regard to the division of responsibilities between Departments and the suggestion of a single Department to deal with it. When one analyses the situation, the complexities are so great that the solution does not lie solely in the area of allocating departmental responsibilities. There are many other issues. Even if the responsibility rested in the Department of Health and Children, as somebody suggested, the Department of Education and Science would still have to be involved in relation to policy and integration, to which Deputy Stanton referred. No matter how we allocate responsibility, there will still be issues involving two or more Departments and as between those delivering the services on the ground, it will require integration between different parts of the health and education sectors.

It was my intention to give three of four minute slots and to bring in some of the other people.

Mr. De Salvo

My understanding was that we would be asked a specific question and answer it at that time, so I have been frantically making notes. It will be essential that I call on KathySinnott because her experience in this area pre-dates mine considerably.

The increase in incidents has been the subject of several questions and is an important issue. The figures considered by Pat Matthews' group did not cover all of Ireland. It would be my organisation's point of view that the real figures are higher, and we should be very concerned about that. We have looked at UK figures regarding its primary education system which show that in 1988 there were approximately one in 2,000 children with ASD in the primary education system. I am advised that this figure had in 1998 dropped to one in every 250 children. That is frightening and something with which we must deal.

I have also read that the New York primary education system is having great difficulty dealing with the numbers coming through there. We know that the figures in California, where they have kept very good records since the 1970s - probably the best in the world - show massive increases. The figures have doubled in the last four years. I urge the Department of Health and Children, in conjunction with organisations such as mine, to once and for all put forward finance to establish how many children we can expect to have to educate. Perhaps, the joint-Departments need to look at this.

I was asked about the attached funding, which is essential. For example, because I took a forceful stance in regard to my daughter's education, she had funding attached to her by various Government Departments which were unrelated to my income and exceeded the entire family income of one of our members, which is ludicrous. The social welfare payment of a single mother family to feed and educate all of her children, including one with ASD, was less than the funding provided for my daughter, because they lived in a different area. That must be addressed.

With regard to my links to the Department of Education and Science, it is easier for groups to deal with the Department because it is a national organisation. For example, one can go to the special needs section in Athlone. We will have to work hard with the Department of Health and Children so that when we go to the Department, we are referred to a health board. There are massive inconsistencies between the different areas and the support structures in place. I telephoned the Department of Social and Family Affairs to tell them what my daughter gets and the Department did not even know of the grants. There is massive mis-communication which must be addressed.

I agree that there has been consultation with regard to the Bill. However, I note that it has been some months since the Irish Autism Alliance has been in. We are seeking a meeting with Tom Boland. While we got about half way through the issues we are concerned with, we must fully deal with those issues.

Ms Malone

Deputy Enright

What is the time scale for the implementation of the task force recommendations? What resources are available for pre-school provision for children with autism? Will there be funding for pre-school placements for children with ASD? I also have a question for Mr. Baldwin. We need to examine the issue of special needs assistants. Special needs assistants are relatively unqualified but they are dealing with children who need special attention. They are not in a position to provide it because they are not given adequate training. Does the Department have a plan in that regard? The ideal of Middletown is worthy but it is like rearing a baby on champagne before teaching it to drink milk. The services need to be put in at ground level before installing the highest level. In effect, we are showing people what they cannot have.

Deputy Gogarty

When Mr. Kilroy was before the committee last January, he indicated that the order for the establishment of the national council for special education would be initiated in February. To my knowledge, the order has not been initiated. He said the council would initially be established by an order under the Education Act 1998 and that it would be followed by the publication of the much delayed Education for Persons with Disabilities Bill. Will this order be made in the short-term? It is crucial for getting people in place. Otherwise it could drag into September or it might even be January next year before everything gets moving. We need a definitive date and a mechanism to establish the council to ensure people will work in local areas from a set date and that there will be no deviation from that.

Mr. De Salvo

The information and communication is getting better but the reason nothing was said about the centre in Armagh is that I know nothing about that centre. The co-operation is getting better but parents must be included if any of this is to work. That is the bottom line. I believe this is being taken on board but it is a slow process. We need to push it along and ensure it is embedded.

There were some references to the NEPS. I spoke to somebody from the NEPS a few days ago. It was the first time for that to happen and that is good and positive. It means things are moving forward. However, yesterday I got a telephone call from a parent who had received an assessment from the NEPS. The NEPS had formulated an opinion on paper; it had not seen the child on which it formulated the opinion. That concerns me. If we are to rely on the NEPS and consider its suggestions, it needs to see the children. That is also what the NEPS wants. We have to look at what the parents are seeking. When they have an assessment saying what is recommended we need to move forward on that.

A question was asked about the attached funding. The child gets the diagnosis and the action plan I mentioned is put into effect. The child can then approach a national school and the funding comes with the child. I was turned away from 24 schools in the Kildare area. It is not because they do not want my daughter to be educated in their schools but because they have no way of dealing with her. They were correct. As I learned more about it, I would not have sent her to the schools. That is what we must examine.

Mr. Matthews

I was a member of the task force. There was no consultation on the new project. However, we requested that a review body be appointed which would monitor the implementation of the recommendations. To date that has not been agreed.

There was disappointment for the chairman of the task force, Professor Drudy, that there was no official launch of the task force report. It is an excellent document and people put a great deal of work into it. It should be circulated widely and should have been given an official launch. That was disappointing. Members of the task force did not receive an acknowledgement. Again, communication has been poor.

The population study by the Irish Society for Autism is a fairly exact study of the Eastern Regional Health Authority area. The study identified an incidence rate of 15 per 10,000. Had the study been carried out now, it would have been more than 20 because it is an increasing graph. I do not know where that graph will stop. At the time of the study it was 15 and that was a jump from 4.9 four years previously in the same area by the same population study. That is a definite increase that could be used even for basic planning. It is a good study and it should be used.

With regard to the 900 residential places, I am not aware of any autism specific unit receiving funding in the past two years for new people. I am aware that people have been placed in mental handicap centres but that is not the most appropriate place. Children with autism are now going into a good educational system but there must be an autism specific service into adulthood which would provide the continuation of education the adults will require for their lifetimes, whether it is vocational or otherwise. It requires an individualised approach but it has to be done in an autism friendly environment. The health boards do not subscribe to that notion.

The variations in approach from health board to health board are huge. If one lives in one health board area and moves to another, there is a different set of rules. I cannot understand why, in a small country like Ireland, there cannot be consistency across the health boards. The educational system cannot be well supported until we solve some basic problems in the system of delivering health care.

Mr. Des McKernan

Deputy Hoctor mentioned awareness of Asperger syndrome. My wife and I operated an information and help line for six years on a voluntary basis. We now have an office in Carmichael House, where information is available. We held the first seminar on Asperger syndrome in June 1995 and every year we hold at least one or two seminars. We hope to hold an international seminar in November this year.

I counted 187 recommendations by the task force. There are more reports. There are 24 recommendations in the report of the working group on Asperger syndrome. There is also a review of services in the eastern region. That is two more reports but nothing seems to be happening on the ground. I will give one example. My son has been in a psychiatric hospital for three years. We have a residential house which the health board promised, in writing, to establish as a residential home but it never happened. That is the reality.

Chairman

I do not wish to get into individual cases.

With regard to CABAS and the ABA, an inspection process has been ongoing not just for the ABA and CABAS facilities but for other autism specific facilities. We intend to consider the future of those projects in the context of the inspections. There is provision in place and we accept that they do good work. We will not approach this unreasonably but we need the result of the inspection and we need to talk to the inspectorate about the outcome. We will approach these projects with recognition of the work they do, the need they are fulfilling and the response they are giving to the children.

As was indicated earlier, a series of meetings has been set for the interdepartmental committee. It is not the same as the interdepartmental working group in the recommendation. That is a separate one which has not yet been implemented. Our indepartmental committee is up and running with a series of meetings and it will be available to meet interest groups if they wish to talk to the two Departments together.

We will respond fully with a note.

Chairman

We will get the type of information the Deputy is seeking in a written report. Mr. Baldwin has indicated that he was not there at the time and he is not totally au fait with the situation. Any other questions?

Deputy Stanton

Chairman

I suggest we adjourn the sitting. Is that agreed? Agreed.

I thank the representatives of the Irish Autism Alliance, the Irish Society for Autism, the Department of Education and Science and the Department of Health and Children for their attendance. It has been an interesting and thought provoking meeting.

The joint committee adjourned at 12.45 p.m. sine die.

JOINT COMMITTEE ON EDUCATION AND SCIENCE debate - Thursday, 22 May 2003

Autism: Presentations.

Mr. Marc De Salvo

Mr. De Salvo

Ms Kathy Sinnott

Mr. Pat Matthews

Ms Ornaigh Malone

Mr. Donal Devitt

Mr. Devitt

Mr. Peter Baldwin

Mr. Baldwin

Mr. Devitt

Mr. De Salvo

Ms Malone

Ms Frances Fletcher

Mr. Devitt

Mr. Devitt

Mr. Devitt

Mr. Devitt

Mr. Devitt

Mr. Baldwin

Mr. Baldwin

Mr. Baldwin

Mr. De Salvo

Mr. Matthews

Mr. Des McKernan

Mr. Baldwin

Mr. Baldwin

Mr. Baldwin

Mr. Baldwin

Mr. Baldwin

Mr. Baldwin

Mr. Baldwin

Ms Sinnott

Ms Sinnott

Ms Sinnott

JOINT COMMITTEE ON EDUCATION AND SCIENCE debate -
Thursday, 22 May 2003