Education for Persons with Disabilities Bill 2003: Presentations.

We continue today with presentations on the Education for Persons with Disabilities Bill 2003. Before us today are representatives of the Asperger Syndrome Association, the Hope Project, the Irish Autism Alliance, the Irish Society for Autism and the Irish Progressive Association for Autism. We have agreed that the first part of the meeting will involve five minute summaries of the submissions the groups have made to the joint committee, focusing on the key points relating to the legislation. I ask witnesses to stick rigidly to this schedule as it would otherwise prove impossible to accommodate questions. The schedule worked very well yesterday and I am confident the same will be true today.

We have asked a specific committee member to ask questions on each of the presentations in case we might miss important points. While the Bill will come before both Houses of the Oireachtas, amendments to it will be considered by this committee on Committee Stage. We are really interested in the ideas witnesses have which might improve the Bill from the perspective of its beneficiaries.

I draw the attention of witnesses to the fact that while members of the committee have absolute privilege, this same privilege does not extend to those appearing before it. 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. The first presentation will be by the Asperger Syndrome Association.

Ms Ornaigh Malone

Our submission to the committee dealt with the definition of the word "disability" - I will deal with that last. Our second concern is that the Bill is not rights based, but is based on the availability of resources according to the Minister for Finance. That point is self-explanatory in the context of the current circumstances in respect of services. Additionally, we cannot stress enough the role of the parents and the need for them to be involved in every stage of the process. Equally, we feel they should not have to ask for results at any stage. They should be supplied to them automatically, particularly any result pertaining to the welfare of their children.

We would like individual education plans devised for each student who requires one. Designing these plans should not be the role of the principal of the school. Instead we would prefer a multi-disciplinary team which should include, at least, the parents, the student, a psychologist or a member of NEPS, a resource teacher and perhaps one additional teacher. The plan should state explicitly attainable goals for the student or students and allow for progress to be measured. It should be reviewed as often as required.

The Bill does not refer to students who are not in school at present. We deal frequently with students who have dropped out of the system and who are receiving no education whatsoever. Students could be receiving home tuition. Equally, the Bill does not mention studentsin pre-primary education or adult learners.There is no mention of training for any of the teachers.

We wrote to the Minister stating that our association has difficulty with the definition of disability used in the Bill. It is defined as "a restriction in the capacity of the child to participate in and benefit in education on account of an enduring physical, sensory, mental health or intellectual impairment". We would much prefer the definition used in the Education Act, which is "a condition or malfunction which results in a person learning differently from a person without the condition or malfunction". On 22 September we received a letter from the Minister stating that it was his intention that the definition of disability in the Bill would cover Asperger's syndrome and that children with Asperger's syndrome would enjoy the protections conferred by the Bill once it became law. He stated that his aim is to ensure that all views are heard and, where practical, taken on board. He stated that he believed that this could be accommodated.

I thank Ms Malone for her submission. The next contribution is by the Hope Project.

Mr. Andrew Godson

Kathy Sinnott could not be here today and she contacted me yesterday to ensure there would be someone to take her place to make comments. I will not outline the comments of the Hope Project because Ms Sinnott has sent those in writing. I will make some additional comments but before I do so I will make one particular comment on Ms Sinnott's behalf. In reference to the Sinnott case in which the Supreme Court decided that Jamie Sinnott had a right to education as an adult under the Education Act, part of the function of the Bill is to implement the Education Act and, as such, Ms Sinnott wanted me to communicate that the Bill should give the right to an education to adults with disabilities, although this is not mentioned in the Bill.

My first comment concerns the language used in the Bill. Some of it conveys rather negative imagery. For example, there is a reference to "restriction in capacity". Being from the UK, I am familiar with some of its reports and Acts, particularly the Warnock report of 1978. It was a great step forward for special education in the UK. Now, however, many commentators criticise it deeply for the type of language it used. Disability rights bodies need to be consulted and, bearing in mind what people will say about the Bill in ten or 20 years' time, we need to use language that is enduring and which will still be appropriate and relevant at that time.

Much of what I have to say concerns mechanisms and the way in which things will work in schools for the people, principals and teachers therein. There are times when the child with a disability will be included in a mainstream class, in which case there needs to be provision for other parents who have children without disabilities in that class to formally make representations if the child with the disability is having a detrimental effect on the others in the class. This is possible and therefore the rights of other children without disabilities must be considered. If this occurs the pupil is evidently not in the correct school or class and something needs to be changed.

There is a difficulty with identification and referral of children. If a child in a school is identified as having a special need or an extra need, there needs to be some formal sequence of procedures whereby the relevant authorities can be alerted that this child needs extra help, as well as formal documentation of what happens until outside help is brought in. The point is to have guidelines laid down in stages and to have the documentation fully filled in and monitored by an external body. This would protect the school and the principal from possible accusation of neglect of children with special needs. Principals in particular are groaning under the weight of things they have to do already, and rigidly specified guidelines and procedures for children identified as having a special need are absolutely vital.

On writing up education plans and expertise in schools, in terms of teachers who can teach children with special needs, many schools do not have the staff with the ability to write special plans for children. There are many schools with a very small staff complement and they may not be able to do the work required. There needs to be provision for setting up consortia of schools to pool expertise in geographical areas. Allied to this, there is a great need for training of staff and trying to accelerate their professional development. What parents want is staff who can teach their children in schools. This, evidently, is not the case in many places. There needs to be standards for teachers and staff in schools who teach children with disabilities. As far as I know, they do not exist at the moment. There needs to be provision for extra training.

Principals need a lot of guidance because there is a possibility that, without it, the whole assessment process would grind to a halt under the weight of the huge number of referrals by principals. There needs to be guidance and help so principals only refer pupils who need assessment. I have gone on for too long.

Other issues will arise during the questioning in any event. We will move on to the next presentation, which is by Marc de Salvo and Dave Highland of the Irish Autism Alliance.

Mr. Marc de Salvo

The Bill is seen by the Irish Autism Alliance as a positive step forward and a mechanism which I hope will assist children with autism in accessing appropriate education. It has been well documented that children with autism have been denied or hindered from gaining access purely on the basis of their disability. In the past, parents who were not able to secure an appropriate placement were forced into drawn-out court proceedings to secure their children's constitutional right. It is our hope that the denial of this right will end upon the enactment of this Bill and that it will be written into the history books, once and for all, as something which a less-informed society used to allow.

The Bill is detailed and clearly recognises the parent's vital role and right to be directly involved in the planning and implementation of his or her child's education. In the past we have seen how parents have been side-stepped or ignored by various Departments. This practice is simply not acceptable to our organisation. We would also note that in the past the Government had pushed forward with Bills that would directly affect our members without any form of consultation and we are therefore glad that on this occasion the Department of Education and Science has engaged in consultation with our organisation.

As can be seen in the above paragraphs, we have referred to what has happened in the past and highlighted what appears to be the first step in a promising future. The concerns our organisation has at the moment is what we would refer to as the current state of flux and how the Bill will ensure that the necessary resources are available to implement the needs it will identify within communities across this island. With regard to the state of flux, we have a genuine concern that while we await the impending Bill, that children and adults currently in need of appropriate placement will be left in limbo and no services will be provided. It has been our organisation's ongoing experience that when a void occurs in services and the various Departments take no action to fill this void, the seeds of distrust between parents and the Government are bound to grow quickly.

The Bill does appear to address several of the main problems our members historically have encountered and still encounter in trying to access their children's right to an appropriate education. For example, by introducing the power to appoint placements in schools, special schools or services, our organisation believes that this will assist parents securing their children's rights. Unfortunately the problem with this power is that as it currently stands, the personnel required to carry out even the most basic of assessments are not available in sufficient numbers.

To explain further I would like to break this point down into two broad sections. As regards early diagnoses, parents are still waiting months to receive an appointment with their health board teams. It has been the organisation's experience that most if not all health board teams are massively over-stretched and handling caseloads that make it impossible to deliver complete or timely reports on our children. For the Bill to work in practical terms one of the biggest stumbling blocks will be the lack of resources. Sufficient resources are not in place to meet the unfortunately growing number of children with autism. We are concerned that if this is not addressed the process will fail before it begins.

The Bill outlines in detail how, upon diagnosis, an educational plan must be drawn up and put in place within a specified timeline. While this structure is welcomed, as an organisation we simply cannot see how it will be implemented. The resources are not available to draw up and implement these IEPs. If the resources are not in place to ensure both the planning and implementation of the plans in practical terms, the process will fail.

Autistic spectrum disorder is, as its name suggests, a spectrum of disorders and therefore the Bill will have to prove to be flexible enough to ensure that it can respond to the individual's needs. While we welcome the overall structure of the Bill and the defined route from diagnosis through to educational placement, the downside to this structure is a feeling that the Bill is not child-centred enough.

While we note that the Bill is only designed to meet the needs of our children up to the age of 18, we will we looking for a system of redress for our older children who did not receive an education in the past. It is unacceptable that children who are now over the age of 18 but did not receive an appropriate education, will just be forgotten and we would look to the Government for its suggestions as to how this breach of their constitutional rights will be redressed. We also note in the Bill that both the pre-school children and those chronologically over 18 years of age will be the responsibility of the health boards. This causes us concern as it has been indicated by some of the health boards that they are not in the "business of providing an education". If this remains the case then this section of the Bill will have to be changed. In even broader terms there are several other issues relating to the wording of certain sections of the Bill, however, we plan to address these issues in further consultations with the Department of Education and Science and will be seeking a meeting with the Minister.

The next submission is from the Irish Society for Autism.

Mr. Pat Matthews

A Theachtaí agus a Sheanadóiri, we are pleased to have this opportunity to address this committee and raise the main points that are of concern to us. We are broadly in favour of the majority of the provisions of the Bill and welcome it as a major advance in the plan to make provision for people with disabilities. While we have outlined a number of our worries, such as the role of the Department of Finance and the clause on reserved privilege, we will convey our principle concerns now.

While we support the Bill in its catering for the generality of disability and respect for the principle of integration of disabilities in general, in our experience, we know that many of our people require autism-specific services. We will address the Bill from the specific perspective of the needs of people with autism.

We welcome the proposal to provide special educational needs organisers and the sections of the Bill that deal with processes of assessment and individual education plans. We regret that the Bill stops short of providing for a statement as is the practice of Northern Ireland and Britain. When a child has been "statemented" in these jurisdictions, that statement carries statutory rights to a provision of services by the education and health service. We would like to see the same strength given to the IEPs and assessment arrived at for people here. While it might seem that a natural consequence of providing a child with an assessment and individual plan would be that he or she would automatically be placed in an appropriate school and supported by appropriate professional services, until now there have been serious deficits in the numbers of teachers and professionals, such as speech and language therapists. When parents have sought services, they have frequently been told that while the Department is willing to provide services, the professionals required have not been available and this is also true for autism-specific teachers. The report of the task force on autism, presented in October 2001, presented a raft of recommendations on the training of teachers. We ask that these recommendations be carried out.

We are pleased that the Bill in its title addresses education for persons with disability and does not speak of children, although it goes on to define the age parameters of a child. In 2000, the EC produced a memorandum of lifelong learning. The Commission defined lifelong learning as, "all purposeful learning activity undertaken on an ongoing basis with the aim of improving knowledge, skill and competence". It is all-embracing and encompasses all learning, from the early years through adult life - including the third age - encompassing a common core of knowledge and skills which go beyond basic numeracy and literacy. It also relates to not only employment-related skills, but the updating of all kinds of abilities, interests, knowledge and understanding throughout life, and all kinds of learning including non-formal - such as acquiring vocational skills in the workplace or language skills from participating in a study circle organised by NGOs - and informal skills such as learning how to play football or an instrument.

The task force on autism strongly endorses the aims of the memorandum on lifelong learning. In paragraph 10.6.3 the reports states:

It is the considered view of the task force that the provision of education and supports for persons with ASDs and their families must be considered as a lifelong process, because of the uniqueness of their situation and because in today's world, education is recognised as a lifelong pursuit.

The task force also stated:

The late adolescent/adult with an ASD needs: a statutory right to appropriate ongoing education according to individual need; ASD adult and family support plan; protective and proactive strategies based on individual presentation; access to the support of a mentor/key worker in all education and training settings; meaningful leisure and social opportunities with a particular focus on addressing social interactional difficulties within activity orientated groups; and therapeutic supports, e.g. counselling, speech and language therapy, occupational therapy, behavioural supports.

The task force lists many acceptable options of curricula, services and locations that will serve the educational needs of people with ASDs. There are listed in the report.

We are happy that in section 1, the Bill used the definition of the 1998 Act in defining a school as "an establishment which provides . . . and may also provide courses in adult, continuing or vocational training." This, added to the provisions in sections 9(6) and 14(1) of the Bill will, we hope, provide the framework and opportunities to implement the recommendations of the task force and ensure lifelong education for our people with autism.

The task force report is an excellent document compiled by eminent figures in the field of autism, including the teaching establishment. All the recommendations are contained within it. If it is incorporated into this Bill we will have no further problems with autism education in Ireland.

Thank you. The final presentation is from Mr. Kieran Kennedy, chairperson of the Irish Progressive Association for Autism.

Mr. Kieran Kennedy

May I start by endorsing the proposals put forward by NAMHI and the National Parents Alliance yesterday and the majority of the proposals put forward by the IAA, ASPIRE and the ISA today? I will not go over the same ground again. The main aim of my presentation is in regard to the role of an advocacy service. To give members a dose of reality, I will give a few examples of how bad the problem is getting in the Southern Health Board area.

In the last five-year plan there was provision for 75 places for autism. The actual figure as of the end of last year was in excess of 300 people. Figures which we have projected for the next five-year plan which is about to come into operation indicate 1,000 people. We have had a huge increase in the numbers of people with autism. The figures which will come available from the various plans indicate that a huge number of children in the mainstream education system are not even diagnosed as being in the ASD spectrum. There is a huge area to be explored in that regard. The services in the Southern Health Board area cannot cope with the levels we have at the moment. Within five years, we will have a threefold increase in those figures - from over 300 to over 1,000. That is a huge increase.

We do not have the personnel or the resources at the moment. When this Bill is being discussed, it is of paramount importance that we get something on the Statute Book as soon as possible. We cannot exist as things are at present. Perhaps those figures will bring home to the committee the scale of the problem we face.

My main focus concerns an independent advocacy service because it is the one area which needs to be addressed and I have worries that the proposed disability Bill will include a provision for an advocacy service but will exclude the educational field. A provision for the creation of an independent advocacy service should be inserted into the Bill to copper-fasten the situation. This is to ensure that the interests of children and parents are being looked after. This measure alone would eliminate the need for parents to go the legal route to secure constitutional rights for their children. The IPAA has lost count of the number of times parents in our area have said to us that they were not told of the educational options available for their children, were not consulted about what type of service provision was going to be made, were not consulted about the assessment and it was not explained, and they do not understand what the professionals are saying.

Parents of a newly diagnosed child are not experts by right but they are expected to know and understand everything which is said to them. They are in fact expected to be experts. It is small wonder then that problems occur when such parents are told that they are getting the wrong provision or that other options were available. There is no one educational solution but many and varied ones. Independent parental advocacy is of paramount concern if any educational Bill for the disabled is to be a success.

I wish to draw to the attention of the committee the six points outlined by the disability legislation consultative group which was set up to advise on the main disability Bill. The points were: an independent advocacy to be set up; a full range of advocacy; this should be available to people with disabilities in all settings; it should include parents and families where appropriate; there should be training for people with disabilities in advocacy; and there should be consultation with stakeholders in developing advocacy services. These should be brought forward and used in an educational setting.

The roles of the advocacy as a model the IPAA put forward to the Southern Health Board for including in the next five-year plan are as follows. The service shall undertake many roles within the area of ASD provision in the plan. For parents who may find the process of dealing with the diagnosis of an ASD child in the family a overwhelming event, the advocate will be an independent source of advice and a sounding board for the digestion by the parents of the flow of events which have to be undergone when a child in the family is suffering from ASD. The principal role of the advocate is to assure the parents and the ASD person, where appropriate, that the family is availing of the optimum resources which are available through the health board.

If the situation arises that the advocate must advise the parents of the ASD person that in his or her considered opinion the correct events are not taking place within the framework of the plan, he or she should advocate on their behalf.

The professional advocate would give group workshops to several parties, primarily parents, re entitlements, best practices and so on. Mr. Pat Walsh particularly and ourselves carried out a great deal of research on countries all over the world and the model we favour as more appropriate to the Irish setting is the one used in the National Autistic Society in the UK. All the details are in the speech which members have been circulated with.

The service will advocate for the child with ASD through the parents. Where appropriate, the service will advocate directly for the person with ASD.

I do not have the option I had yesterday of extending the meeting, therefore, I ask members to be brief when asking questions.

I welcome everyone and thank them for the information, the work they have invested in this and the advice they have given us which is so useful to us when we come to deal with the Bill in debates and amendments.

Ms Malone appears to have difficulties with the definition of disability and almost everyone we have met so far has had similar problems. Yesterday, it was mentioned to us that the definition is based on an impairment model and it should really be a needs-based model which is more up to date. What are her views on that?

In section 5(4) of the Bill there is an issue in regard to assessment. It states that the Minister for Health and Children would make regulations to determine the standards necessary for assessment. Have any of the witnesses examined that because it seems that the Minister could set standards that may exclude certain children and others from the provisions of the Bill if we are not careful? This is something that is done by regulation once the Bill is passed.

Mr. Matthews was quite supportive of what he saw in section 6 of the Bill in regard to the provision of services for adults. However, my reading of section 6 is that in each subsection it refers to the child, not the adult. The child is defined as someone under the age of 18. Therefore, I am concerned as to how he sees this Bill providing services for people over the age of 18 and perhaps he could point out how exactly that happens since I am at a bit of a loss as to how that is the case.

I raised the issue of advocacy yesterday on a number of occasions. It is important we have that provision and I am interested to know what the witnesses' views are in that regard.

I welcome all the groups to the committee and thank them for their valuable submissions. We had various submissions from different groups yesterday which were very helpful. Deputy Stanton referred to the point made by the Psychological Society of Ireland in regard to the impairment versus needs model. Therefore, I am interested to hear the views of the witnesses on that issue. Yesterday we dealt with the role of parents in assessment, which is covered in section 5. The section lists the various people who will have a role in assessment, excluding parents. Judging from their experience, could the representatives say whether that is a flaw in the Bill?

Ms Malone referred to the definition of disability. Have any of the delegates had any communication from the Department of Education and Science in this regard? Yesterday one of the delegations said that the Department had envisaged that dyslexia would be included in the Bill even though there was a fear that it may not fall within the definition. Does the definition require reworking? The forming of an opinion by a principal, as referenced in section 3, or a health board in section 4, cannot be the subject of an appeal. Is that a concern for any of the delegates? There is no procedure for appealing the principal's or health board's opinion that an assessment is not required.

I agree with Mr. Godson's comments about the fact that there is an in-built failure requirement - a layer of failure that is required in order to get out of the school-based solution. This needs to be dealt with also. Do the representatives have any views about the make-up of the council and the appeals board? Should there be specific representation for their groups?

I welcome the groups to the committee. I would like to focus on the area of assessment and services. We have had differing opinions on how watertight the Bill is in terms of the right to be assessed quickly and to have services provided. The remarks of both Mr. de Salvo and Mr. Matthews were relatively positive in this regard. We have had other submissions, including Ms Malone's and Ms Kathryn Sinnott's, which were less positive about what the wording of the Bill guarantees, although it does provide the right to have an assessment commenced within three months. Are the delegates satisfied that the current wording is enough, particularly in light of the shortage of expertise in the system which has been referred to by nearly everybody here? Should there be tighter rights in terms of the completion of the assessment and the provision of services that the assessment indicates are needed by the child?

In relation to the individual education plan, some groups yesterday were concerned that it was too systems-based - that the principal of the school would be drawing up the plans - and that perhaps it was not individualised and child-centred enough. Are the representatives satisfied that the Bill is strong enough in this area? For children with autism, an individual plan is often needed, which is not necessarily school-based.

Concern was also expressed that the Bill is not strong enough for those whose education is being provided outside of the regular school setting. The one-to-one education sometimes required for autism can be a little different to what is required to deal with some other disabilities. Our main purpose here is to make the Bill as strong, tight and rights-based as possible, so the input of the representatives will be crucial in terms of the wording. They do not need to provide an answer in this regard today, but we want to be sure that our proposed amendments to the Bill achieve what they set out to achieve.

I support the proposal for advocacy in the Bill. Could Mr. Kennedy tell us the kind of advocacy service he is proposing? Does he envisage somebody being appointed as an independent person who works for the State or the health boards representing the interests of the child, or would he prefer competition in that area, as is the case in the United States? On CNN recently I saw an advertisement for an advocacy service, saying that company X was the best at advocacy. What sort of system is being proposed? It is important that we get this right.

Mr. Matthews seems to be happy with most of what is in the Bill. However, I have a question for all the representatives. If they were asked to outline one section which they consider needs strengthening or improvement, which would they choose? The purpose of the committee's deliberations is to ascertain where problems can be envisaged. It is a helpful exercise for our members.

I welcome the representatives and congratulate them on their work over the years, which has been successful in bringing autism to the attention of the wider public. Many people are far more educated about autism now because of their work. It is to be hoped that the Bill is a step in the right direction.

Deputy O'Sullivan raised a number of points about advocacy. I want to understand the scale of what is involved. Mr. Kennedy's submission makes reference to professional teams, local advocates and volunteers. Is it intended to have so many families per advocate, for example? What are the numbers involved? How can we ensure the independence of an advocacy group? Is it to be totally independent of all Government agencies? Is it controlled by the parents or families and, if so, is it still independent? The submission states that an advocate would not be a member of one of these groups. Is it possible to be totally independent in this instance? Everybody has to be paid by somebody or employed by somebody. How many children could an advocate cater for, and how much would he or she be paid? Has the model that was put before the Southern Health Board been approved, or is it hoped that it will be approved and implemented? There was some ambiguity about that.

Life-long learning is something with which I agree, but how will it work? We can talk about a system in which people are integrated into mainstream education, but what does Mr. Kennedy have in mind for those who are over 18 years of age? "Age-appropriate setting" is the terminology that has been used. Is it a case of creating new settings? How is it envisaged that this will work? For example, is it envisaged that mainstream education will apply up to the age of 18 years with special schools applying thereafter? Will people be taken out of special schools and put into mainstream schools, only to bring them back into special schools again?

My final question is a general one which I do not mean as a criticism. There are five different groups here talking about autism - perhaps there are five different political parties as well. In order that we can genuinely represent a view of autism and ensure the Bill reflects the wishes of the groups, it would be useful if we could have a core submission on some of the key points about which we know all the groups are in agreement, particularly in the areas mentioned earlier, including definitions. For much of its meeting yesterday, the committee considered definitions of disability, which can be varied. I would not like to adjudicate on all the definitions given. It is bad enough to do it in general but if we come down to five different groups in one area, it will be difficult to satisfy everyone. We would welcome any ideas for specific amendments to the Bill, given that we have a template here.

The witnesses do not have to answer all points raised today in the next five minutes. If any issues come to mind in the next weeks and months, witnesses should feel free to contact members because we will try to ensure the Minister takes them on board in the Bill.

Ms Malone

On definition, our key concern was that a number of hidden disabilities were not mentioned, such as Asperger's syndrome, attention deficit disorder, attention deficit hyperactivity disorder and dyslexia. In the explanatory memoranda to the Bill, it is stated that not all children who have difficulties learning are children with special educational needs arising from a disability. There is a risk the legislation could lead to over-identification of children with learning difficulties as children with educational disabilities. We are concerned that the definition has changed so radically since 1988. We hope the Minister's response will ensure that children with Asperger's syndrome will be included. I could not find the section on the Bill referred to by Deputy Stanton.

Section 5(4) deals with how assessments are decided and, by my reading, the Minister for Health and Children will have the power to determine the regulations around which assessments will be made. It appears to be a trap door whereby when the Bill is passed, the Minister will be in a position to outline the levels below which children will not receive any assistance under the legislation. Do the witnesses have any views on that?

Ms Malone

I had not noticed that, but I will answer the question later. The only communication we have received from the Department is a letter from the Minister on the definition, but that was in response to the only question we asked him.

We see the role of the parents' assessments as critical. It is vital that parents be included at every step of the process. I talked to a teacher yesterday who said that there was no way the principal of the school could anticipate IEPs as part of her daily tasks. We are concerned that the Bill must be rights based.

Mr. Godson

A common feature of all of the comments is that the process of assessment is central to the Bill. We want a good quality education system with quality and appropriate assessments throughout the country but I am worried that there may be different standards in different parts of the country according to where the expertise is. It is concentrated in the main cities and people in outlying areas may have difficulty in gaining access to psychologists, speech therapists, physiotherapists and those others needed to make up an assessment team. There must be a tightening up here because the Bill refers to if, "in the opinion" of the principal an assessment needs to be made. That leaves schools and principals open to subjective judgment without proper guidelines and procedures. It could lead to a child or parents in one area receiving an inferior service because the principal or schools in that area, or the special needs organiser, know they will not be able to convene a suitable team in the required period. As a result they go down the easier route to get something done. In the face of parents desperately wanting some action, the opinion of the principal may be that we need a team that only has the social worker and the parent and one or two others because they cannot convene the necessary team in the required time.

Assessment must be of the same quality in all regions and in all layers - national, second level, special schools and pupils schooled at home. Things must be tightened up to ensure there is uniformity of provision and access to suitable assessment.

Section 8(2) states that the matters in the education plan should include paragraphs (a) to (g). The Bill would do well to ensure that paragraphs (a) to (f) are legally binding to ensure that the education plan requires the Department and school to provide what it prescribes as a right according to law. That also means the appropriate resources must be given to schools and teachers for the education of the child. Some of this has the weight of law but there must be a statement to ensure the child receives it, that it is reviewed year by year and continues from one school to another as the child moves.

The statement of special educational needs in Britain which is legally binding is now falling short because many of the providers do not include appropriate transport to and from school, which is a big issue. With cost cuts in Britain, therapists that should be provided, such as in speech and physiotheraphy, are often not available and nothing is stated to indicate who will provide them as to do so would leave the Department and the health authorities in the position of adversaries arguing that the other must pay for certain therapies because they fall into either the education or health bracket. In view of this, the relevant section in the Bill must be legally binding to ensure the children get what they need.

I would like section 18 changed. It states that the council should have the functions of disseminating information and co-ordinating provision of education support services. It is all very well to say those on the list should do that, but there needs to be more direction in the Bill that says how it is going to be carried out, as these are huge areas in which to disseminate information to parents. Is it to be done via advocates or through training for parent groups and staff to increase professional expertise? What steps will be taken to ensure that the education plan is being carried out? Who will be involved in monitoring? There are many big gaps here.

There is much talk of time periods in which to conclude various things, such as education plans and assessments. Who monitors the time periods and what are the penalties for not completing them?

Mr. de Salvo

I would need ten or 15 minutes to get through all the questions but I will be as brief as I can. We must be realistic. Our organisation tries to be realistic with our members and deal with the real problems on the ground.

The provisions in the Bill do not stand a chance of being realistically implemented. There are no resources. We have heard from other members in this regard. The situation is ludicrous. I am currently working on behalf of two children who are meant to attend school at the start of this year with zero language abilities. They cannot even get an untrained special needs assistant, never mind where we are hoping to go in terms of monitoring the education programme.

We must get real, and that is the main thrust of our proposal. The idea itself is a good, solid step forward in terms of the mechanism, but I do not see or understand how the provisions in the Bill will be resourced. The Government says it is rights based, but where does the Bill provide that the Government will spend enough money to ensure that the resources are made available to train staff? I do not see it.

As we clearly stated in our brief submission, we are going back to the Department with line by line suggestions. It appears to me that we should now share those suggestions with the committee. We will be clear and specific, but as there are hundreds of them, I will not be able to outline them in a period of five minutes.

To try to address some specific questions, assessment was mentioned on a number of occasions. I am concerned that the Minister for Health and Children will decide who can carry out an assessment on a child. We know that health board teams are massively over-stretched. In one other part of assessment, regarding the drawing up of an IEP, the Bill states that "one of the following members" may carry out an assessment. One of these may be a social worker, who may know nothing about educational provision. There is a wide scope here which needs to be tightened up. We will provide the committee with the necessary information in that regard.

I have discussed with other delegation members, including Seamus Greene who was before the committee yesterday, the question of a principal not thinking an assessment is called for. We were initially concerned about this but considered that there was a process whereby a parent could initiate an assessment. There are three ways in which an assessment can be brought about - by principals, health boards and parents. We would prefer to see parents at the top of the list because we are a parents' organisation. I agree with the person who made reference to the question of what happens three months down the line when the assessment has not occurred. Where are the checks and balances?

It is important that we are realistic. We must get realistically deliverable goals included here. As it stands, the Irish Autism Alliance welcomes any mechanism. Structurally the Bill is not bad, but it needs fine tuning. The most used part of its provisions would be the appeals process. We must get real because there is nothing there. It will not work and will stumble at the first hurdle as there is no training for teachers, principals or special needs assistants. We are waiting for SNEOs, as recommended by the task force. I agree with Mr. Matthews on that. The proposal is there, it is outlined and clear but has not been implemented so far. We cannot see how it is going to be implemented.

We like the structure of the Bill. Mechanisms need to be brought forward, as we cannot have a situation of prying a light on the Constitution and taking cases to the High Court. A structure must be put in place with which we could work. At the moment I can see the appeals process being used the most.

Mr. Matthews

I said I am happy with aspects of the Bill. We are a long way from the Dark Ages when we had nothing, and this will certainly highlight and give children with autism a special place within education. However, it is not an autism-specific education Bill, which would be somewhat different. Within the spectrum of disorders, autism could do with a Bill on its own to encompass all the difficulties we intend to right.

I also wish to come back with specifics, but the whole area of assessment is the weakest part of the Bill and the one about which parents will be gravely concerned. It is the one that will still long-finger the problems they have in accessing appropriate education. Without the assessment they go nowhere, so ensuring that assessments will be provided will help prevent the system from collapsing.

Mr. Kennedy spoke about the increase in numbers. Even within the task force, two years ago we spoke about the need for training of teachers, support staff and speech therapists but I see no great evidence that more money has been made available to meet the explosion in the numbers of children requiring attention. Too many parents are still waiting six, eight, nine or 12 months, with some of them continuing to travel to the United Kingdom to get an assessment. That is wrong. We are concerned with the Bill, but the situation as it exists is in crisis.

Life-long education is a necessity for people with autism. In the section on planning for the future educational needs the Bill states:

The principal or special needs organiser shall take such steps as are necessary as will enable the child to progress as a young adult to the level of education or training that meets his or her wishes and those of his or her parents and that are appropriate to his or her ability.

This is an aspiration that education will continue and that life-long needs will be met. The task force spells out how these should and can be met. We do not have to reinvent this but we will condense it and send it back to the committee.

We have enough information, but it must be incorporated in the Bill. Much work has gone into that, but we must get it right at the beginning, including the provisions dealing with assessment, statementing and diagnostic stages. I am not happy that the Department of Health and Children has the same commitment to this as the Department of Education and Science. There is a weakness in trying to bring together two Departments with different mandates. I do not see disability as an illness or sickness. The Department of Health and Children has special responsibility for illness and sickness. We should look at disability again and perhaps place it somewhere else. That would create a better chance of meeting needs.

Deputy Stanton asked how we could be happy with the Bill when it specifies age limitations and so on. In our principal response we drew attention to the contradiction in terms between the Title to the Bill, which includes the words "for persons," and the fact that it then goes on to talk about children. That brings us back to the High Court, the Supreme Court, the Sinnott case and so on. We are trying to make the best of the Bill, to clutch at the crumbs and the openings we see in it to exploit. The Bill refers to the definition of a school as that contained in the Education Act 1998, which moves away from the narrow concept of what we deign to be a school and talks about general appropriate places of training and so on. This is the kind of loophole we can exploit.

As the Sinnott case highlighted, age parameters are meaningless for autistic and generally disabled people. Needs do not stop at 18 years of age. They need to continue to be addressed. In this we refer to things like the EU Commission's recommendations for all kinds of concepts of development. The academic definition of education is the development of the full person. It is not concerned merely with numeracy, literacy, or the three Rs, or matching red and blue balls but allowing the person to develop into a full social being. We in the Irish Society for Autism already have adult training services for our people and we want the Bill to allow moneys from education to transfer into services like ours.

One of our big worries is section 12, referring to finance. In our preliminary discussion I mentioned the ghost at the banquet and in every clause the ghost here is the Department of Finance, whether one is talking about health boards or the Department of Education and Science. As a former employee of the public service I recall that every time the negotiators from the Department of Education and Science and my union met to discuss salary increases there were representatives of the Minister for Finance present. He sits in on everything and it comes down to money.

Mr. Kennedy

I will deal quickly with some of the points raised. First, the IPAA is not a national organisation, it is a regional grouping, affiliated to the IAA and it liaises with different international groups. As a rough guideline, most of the definitions in official literature are medically based. That idea should be scrapped and the definitions made more all-encompassing.

Deputy O'Sullivan asked about parents' involvement. Parents should be involved at all stages of their child's education, including diagnosis, assessment and whatever happens. Among the things we need included in the Bill are a copperfastening of all time frames and an independent advocacy service. I have a problem with assessment because I know what is happening in our area. In my submission I made recommendations about what should constitute an assessment team. I think Mark de Salvo raised the point that the SNO might have only one person to help him or her. That is a road to disaster. If there is a co-ordinated team one can make better use of resources and cover an area. As there are very few skilled professionals in the field we should make the best use possible of them.

Resources are a key issue. I appreciate there will be problems and that many of the things that should be delivered by the Bill are not achievable in the short-term but could be achieved in the medium term. I urge the Department of Education and Science to consider providing pre-schools. Rather than trying to put more children with special needs into mainstream schools where they cannot get back-up services, it would be better to tailor more special needs schools where the professionals come into the school environment. In other words, this is about best use of resources.

In the Southern Health Board plan we said that by the end of the next five years we would have about 1,000 people in the ASD spectrum. Using examples from the United Kingdom we assumed six sub-advocates would be needed and they would deal with roughly 150 cases each. It seems a high figure but in reality it is not. We used the example of Canada but looked mainly at the UK where the problem cases of those 150 were few, perhaps 20 or 30 cases. Spread over a year that is not a heavy workload. We need six because there are six districts in our health board, so we should assign one advocate per area. They would work out of a central office and if one area had more cases another advocate could help. It is a way of administrating the system.

The head advocate would be more highly trained and would deal with the more difficult cases. In the UK it cost about £55,000 to train the head advocate. The advocate is independent of the health board structures and of the parents' structures. He or she is there to give independent advice to the parents. I do not have the time to go into great detail on this but a newly diagnosed child and his or her parent have no idea what is happening. If they do not have someone to guide them through the system the process falls apart. They will never be told about their entitlements under new legislation. Parents are not being told at the moment and that is why we have so many groups, to tell parents what they are entitled to get because nobody else will tell them.

I think I have answered most of the questions.

You can submit a further presentation arising from some of them. That is probably as much as we can do.

Mr. Kennedy

With regard to the five year plan, and more especially, the figures I have mentioned in my report from Professor Perry's research team and the Southern Health Board, I urge the Chairman to request a copy of that survey when it is due out. I believe it should be fully collated at the end of this month so the committee should be able to get hold of it fairly quickly.

Someone asked about managing a child. In our health board plan we designated a position for a case manager who would monitor whether the plan is being properly implemented and have the power to go back and demand more services or more appropriate services to match the child's needs. I also urge the Chairman to request a copy of that plan when it becomes available. It would be of great use to the committee.

Thank you all. Today's session has been very focused, partly because your interests are fairly similar and it was a different experience for us compared to some of yesterday's meeting. Perhaps we have a better focus on the difficulties in the Bill. You have been very helpful. If there are other matters which you wish to bring to the attention of the committee or of individual members please feel free to do so.

Sitting suspended at 11.18 p.m. and resumed at 11.45 p.m.

This is session five of our consideration of presentations on the Education for Persons with Disabilities Bill 2003. For this session we again have five groups: the Association for Higher Education Access and Disability, HADD Family Support Group, ASTI, INTO and TUI. You are all very welcome.

The first part of the meeting will be taken up with five-minute presentations from the groups, involving a brief précis of each submission already made and the points you would like to raise in connection with the Bill. After the Bill has gone through Second Stage in the Dáil it will come back before us for Committee Stage, at which amendments are considered. That is the principal business we are engaged in here, trying to establish what changes to the Bill groups like yourselves would wish to see incorporated.

I will try to keep strictly to the five-minute deadline because that enables us to get into the question and answer session, which is very useful from our perspective. Before we begin I draw your attention to the fact that members of the committee have absolute privilege but the same privilege does not apply to those appearing before the committee. Members are reminded of the longstanding parliamentary practice 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.

We will start with Ann Heelan and Professor John Kelly.

I will take one minute and the AHEAD director will take four minutes. I want to express our appreciation at being invited to this session. This is a very important Bill, a landmark in the history of education legislation in this country. We are very pleased to be invited to comment on it.

AHEAD, the Association for Higher Education Access and Disability, has been in existence for some 15 years. It is an all-Ireland body supported in part by the Higher Education Authority and having as its members all of the higher education institutes in Ireland, North and South. While our initial domain of interest was higher education, we naturally find that it is also important for us to look at the primary and secondary levels because these are the areas from which students come to higher education. We see it as our responsibility to assist and advise them in every way in relation to attending and participating in the higher education sector.

In the 15 years of our existence, the number of students with disabilities in the third level sector has increased from almost nothing, or perhaps 0.01%, around 1987 to the current figure of about 1.1%, which is a terrific increase but a long way from the 10% which is the national average of people in Ireland with disabilities. Universities, institutes of education and the institutes of technology have made great efforts in improving the facilities and procedures on their campuses for students with disabilities. I will now hand over to the director of AHEAD, Ann Heelan.

Ms Ann Heelan

I thank the committee again for the opportunity to comment on the Bill. I have distilled the seven-page document submitted to the committee into three main points. These relate to the Bill's definition of disability, the rights of children with disabilities to education and the involvement of parents. These are the points on which we wish to comment.

We have some difficulties with the Bill's definition of disability because it is a departure from the definition contained in the Education Act 1998, which provides that it is, "a condition or malfunction which results in a person learning differently from a person without the condition or malfunction". That is a broader definition than the one in the Bill, which is, "a restriction in the capacity of the child to participate in and benefit from education on account of an enduring physical, sensory, mental health or intellectual impairment". Our difficulty is that this would or could appear to exclude people with specific learning difficulties - that the term "intellectual impairment" can often be taken to mean what was known as mental handicap, and does not necessarily refer to people who have learning barriers but do not lack intellectual capacity.

That is a very important point because our recent survey on second level shows that 35% of the students with disability have specific learning disabilities. That amounts to over 5,500 students around the country. It is a very significant group of pupils to potentially exclude from the Bill. We would like, therefore, to revert to the definition of disability in the Education Act 1998.

The other difficulty with the definition of disability is that it also excludes those over the age of 18. As we all know, the impact of disability on many students is that they need extra time. Additional time is a very valid accommodation for a student with a disability, and in many secondary schools there are students of 18, 19 or 20 years of age who are still in the system. Their needs must be recognised. The UN indicates that a better definition of a student with a disability would be one who had not satisfied his or her basic learning needs. Anyone who had not achieved his or her basic learning needs must be included in that definition.

The next point that we wish to raise is the right to education of students with disabilities. We are happy with the fact that the Bill has taken the approach of mainstreaming and inclusive education as defined by the Commission on the Status of People with Disabilities and also the UN Convention on the Rights of the Child. Section 2 of the Bill, states that

The provision of education to a child with special educational needs shall take place alongside the provision of education to children who do not have such needs unless that is inconsistent with-

(b) the effective provision of education for children with whom the child is to be educated.

That statement really alarmed us when we read it, for it clearly seemed to devalue the rights of the student or child with a disability vis-à-vis other students. The State provides for other students and seeks equality of education for all its children. However, in reality equality of education is not equal treatment. Other children given the resources of the State will be educated, but the accommodation and support needs of children with disabilities are different. Any other child will be educated given the resources available. They will be able to participate, but a child with a disability will not.

Another important area in educational rights is enabling the principal to call for an assessment. Given the current medical model of disability, the fact that only 4% of schools have put plans in place for students with a disability and that most people are coming from a medical model, it will be absolutely impossible for principals who have a student who might have a visual impairment suddenly to be able to twist timetables, get a room set up, and find the materials and the right books and equipment. Ultimately they will look at the child and say that it is a problem and that they cannot fit it in.

There will be an opportunity to explore some of those points further in the question and answer session. Thank you very much for that presentation. We now move on to the HADD family support group for its presentation.

Ms Geraldine Graydon

We represent children with attention deficit disorder - also hyperactivity - and their parents. I will talk about ADD with and without hyperactivity. The most important aspect from our point of view is to get the definitions right. If the Bill is to achieve its stated objective of providing children with disabilities with a right to education enforceable by law, it must contain a clear and unambiguous definition of exactly what its provisions apply to. Children with ADD must be specifically covered by this Bill, for it must be one of the most common difficulties found in schools today. Approximately 3% to 5% of children have ADD. Some 30% to 50% of all children referred to child psychiatric clinics have ADD.

We have also provided in our submission a workable definition of a child with a disability, modelled on the US Individuals with Disabilities Education Act 1997, which we feel will cover all categories. However, our bottom line is that we want no legal doubt to exist on whether ADD is covered by the Bill and that it must simply be mentioned in the definition.

There should be no cut-off points below which services will be provided. Once the definitions or scope of the Bill are right, we would like to draw attention to the following points. Provisions for the necessary services and assistance to allow each student to achieve his or her maximum potential must be the fundamental aim of this legislation. The unique needs of each child with a disability must be met by a comprehensive multidisciplinary assessment and preparation and implementation of the individual education plan.

There are different levels of assessment in the Bill. Assessment of all levels should have the same standards and needs base. It must assess abilities as well as disabilities, how disabilities affect a person's education progress, and on which of a child's educational and other needs specific recommendations are to be made. Individual education plans must be just that - individual plans. They should contain clear and concrete goals for both the short and the long-term and state how goals are to be achieved and achievement evaluated.

Children with disabilities should be educated with children without disabilities to the maximum appropriate extent for the child, that is, the principle of the least restricted environment. Special education related aids and supports must be provided to achieve that. Only in exceptional circumstances should it be necessary for children to be educated outside mainstream schools, and in those circumstances the principle of maximising each child's potential should remain paramount. Movement out of as well as into special schools and classes must be allowed to take place where necessary to take account of progress.

It is essential that parental consent and not just consultation be inserted into some critical areas, for example, the designation of schools which the child is to attend, which is in section 9. We have outlined our concerns in the submission and can expand if necessary. Parental consultation, collaboration and participation must be a fundamental aspect of each step in a child's progress, and we have outlined areas where we feel that there are deficits in the Bill.

A child's right to an appropriate education must not be at the expense of other rights, in particular the right to privacy. ADD is not a nice disability. It does not evoke empathy or understanding. It is important for our members that our children's privacy be protected. We have outlined our concerns regarding the release of information on the council's records and the contents of assessments. Time cannot be wasted or a child left without support while waiting for an agreement or the result of an appeal. Support must be provided and timescales on decisions inserted.

Education must encompass the wider areas of socialisation and communication. That is particularly important for children with ADD, who have considerable deficits in those areas. The isolation and stigmatisation of children with disabilities must be dealt with by this Bill. There must be system-driven teacher schools, for isolation and stigmatisation are a major problem for ADD children because of the nature of the condition. Other disabilities evoke empathy, understanding and sympathy, but ADD is not like that, being self-alienating. Training for teachers and special needs organisers in areas of disability should include ADD and must be ongoing and prioritised. Education for over-18 year olds must be addressed. Transition services should be included in individual education plans from early on in second level schools. Access to third level education must be provided for in this legislation. The out of sight children, that is, those in institutions, remand centres and so on, must also be provided for.

We cannot over-emphasise the plight of the ADD child. Parents and other children look on them as a bad influence or troublemakers. Quite often teachers - although not all - do not understand the nature of ADD. They think that parents have no control and let their child do what it wants. They think that the child is spoilt, deliberately bold, noisy, messy, stubborn and will not listen. They look on it as a headache and the science as a way of misleading them. It is self-alienating and, for everyone dealing with the child, exasperating. One cannot over-emphasise the level of exasperation, exhaustion and frustration involved in dealing with such children. There are many more points we could highlight if we had the time but hopefully we will get a chance later.

You will, and if there are items you need to bring to the attention of the joint committee after that, and this applies to all groups, feel free to do so.

Ms Graydon

Thank you.

I now invite the ASTI to make its presentation.

Ms Moira Leydon

I thank the joint committee for the opportunity to address some fundamental issues and the societal and educational response to the needs of children with disabilities. The joint committee has received a copy of the ASTI detailed submission. Like my colleagues, I shall paraphrase what the ASTI considers to be the most important points and add some considerations which are the nub of the issue.

We have made a submission on each draft of the Bill. In our third submission on draft three, we again highlighted the significance we attach to the Bill. We believe it will provide the statutory framework within which the needs of children with special educational needs and disabilities are acknowledged and provided for. We are not quite convinced that it will provide the statutory framework within which the rights of children will be provided for, and that is an issue we can discuss later today and elsewhere. Overall, provided adequate levels of funding are made available, the legislation will effect positive change. There is broad endorsement for the legislation, certainly within the second level sector, and the drafters of the Bill have to be complimented on that achievement.

We share the concerns voiced by AHEAD about the definition of "disability". Certainly the definition in the Education Act is much broader and encompasses the range of specific learning disabilities which are being recognised. More syndromes are being identified. The definition has to take on board the developments in the newer sciences, developments in the psychological sciences and the realities of a social model of disability rather than the medical model of disability. More work needs to be done in this area.

The ASTI welcomes the change in the definition of the child, as it will ensure that children from birth onwards are covered by the legislation as distinct from the age of three onwards, as appeared in previous legislation. This is critical, because the earlier the identification intervention the better the remediation, particularly since we do not have a national system of early childhood education. It is imperative that the needs of children with disabilities are identified at the earliest stage.

Other observations on the Bill relate to the assessment of children with disabilities. The Bill is an advance on the previous legislation in that it includes a provision for the parent to activate an assessment of his or her child if he or she has concerns. That is significant. It also places the onus on the health boards and the council to initiate an assessment. This is a welcome development as it will expedite the process of assessment and identification.

We wish to put on record our concerns about aspects of the assessment of children with disabilities. We all know the core problem, which is that there are insufficient specialist services in the health boards and other agencies to meet the need for assessment. This fundamental problem was highlighted in the special education review committee report as far back as 1993. Unfortunately, as we know from the state of our health services, the waiting lists for assessment and identification are growing by the year rather than decreasing. It is fundamental that this issue be addressed if the Bill is to be implemented.

The consequences of delays and access to services are manifold and are sometimes irremediable. The human consequences in terms of stress to parents and children and the concerns for schools are enormous and have to be taken into consideration. The front line service in the system is the National Educational Psychological Service, NEPS. There are waiting lists of up to two years in some instances for this service. This is a good example of our concerns about assessment services.

The ASTI welcomes the revised provisions in section 3(5) whereby the school principal is entitled to consult a range of appropriate personnel in the preparation of an education plan. That is an important development as it is not humanly possible for a school principal to have all the qualities, knowledge and expertise required to prepare a plan on his or her own.

We mark our concern about the implications for the workload of principals. This is a matter which I am sure other agencies will highlight to the joint committee. We consider that the legislation places incredible demands on a principal's time, expertise and on his or her working day. These are fundamental issues which have to be addressed. The inclusion in the legislation of a one month deadline for the preparation of a plan following receipt of an assessment is not practical. The availability of personnel, time constraints and the nature of the school year means that meeting this deadline is practically impossible. That is not a particularly sensible provision and needs to be addressed.

We wish to place on record our concerns about the implications for the workload of principals. The Bill needs to refer to the services that will be in place at school level as distinct from system level outside the school in the context of how the preparation plan can be implemented within the system. This is a flaw in the Bill which must be rectified if the needs of children are to be met.

We have a number of other observations on aspects of the Bill which I will not go through because of time constraints. However, I wish to make two observations in two generic areas, one of which is the role of teachers. I refer to a seminal report entitled, Integration in Europe: Provision for Pupils with Special Education Needs, by the European Agency for Development in Special Education, which essentially looked at the integration of children with special needs in second level schools. The results of this review are fundamental.

A universal trend in the 14 countries studied was that positive teacher attitudes to meeting the challenge of integration depend strongly on a set of factors, the most important of which are teacher training, the availability of specialist teacher supports and working conditions. This practical dimension, which is highly important, enables teachers to respond to the needs of students at school level. The Bill does not take account of these issues. Apart from referring to the principal teacher, it does not use the word "teacher". This is a grave dereliction. It does not affirm the work of teachers or acknowledge the reality.

I beg the Chairman's indulgence to make one final point which is the most important one. In regard to the legislation, as the adage goes, the proof of the pudding is in the eating. I refer to the Education Welfare Act and the Education Act. The content of the legislation is important but the manner of implementation is critical.

One of the key issues coming through education legislation to date is that teachers feel - I speak exclusively for second level teachers - that the balance of interests is not always met. For example, the balance of interests between the rights of a school to maintain its ethos and to be able physically to meet the needs of students has to be balanced with the right of the individual child to an appropriate education.

The example in the Education Welfare Act of the right of schools to exclude or include certain pupils sets a bad tone because, in many instances, schools and their concerns are ignored. I am not vitiating my argument and the ASTI's commitment to integration in any respect. I am merely saying that, at the implementation stage, the balance of interests of the school community and the needs of all pupils, parents and the broader community have to be addressed. At that stage serious talking will have to take place.

We move on to the INTO which is represented by Mr. John Carr, general secretary, and Mr. Tom O'Sullivan, assistant general secretary.

Mr. John Carr

A number of the issues I was to raise have been discussed so I will brush over them as quickly as possible. We welcome the publication of the Bill and the fact that it acknowledges the rights of children, provides a framework and makes provision.

We are concerned at the movement in the Bill and the previous one towards a more resource-led approach rather than a rights based approach. This is something we would ask the committee to take into consideration. Arising from the Sinnott and O'Donoghue cases, the Department's response has been one of automatic response to the needs of the child, irrespective of cost. As a result of the publication of the Bill, the response has already changed in the Department, moving from a rights based approach to a more resource based one. Unless the Bill concentrates on a rights-based approach, the level of resources will determine the provision. We ask the committee to take this aspect into consideration.

The definition in the 2001 Bill has changed significantly in the sense that the new definition has the potential to exclude borderline intellectual disability, specific learning disability and children with emotional and behavioural problems. This process has begun and the only way we will be able to retrieve the position is to ensure we move towards a rights-based approach.

There is a substantial change in section 12 which warrants consideration. In the original Bill it was the duty of the Minister to make such moneys as were necessary available. In the revised section in the new Bill - section 13 - the Minister's duty is to provide the resources as are determined by him or her. This means the emphasis has changed. We ask the committee to take this aspect into consideration.

We share the concern of our colleagues about the omission from the Bill of special schools and special classes. There are 125 special schools, of which parents who have made such choices are supportive and on whom this major omission is a slight. We ask the committee to ensure the excellent education provided by special schools is given recognition in the Bill.

We are also concerned that there is not enough emphasis on early childhood education which should be the continuum of provision from ordinary class to special class to special school. A child should be able to move in this continuum, depending on his or her needs. The only way this can be achieved is to ensure there is provision in the Bill to support special schools which are oriented more towards 13, 14 and 15 year old children who, in many cases, cannot gain access to schools, or the resources are not available in other provisions and parents rightly chose a special school for their children. This should be protected.

We have issues to raise about the education plan and the resource implications. As the case has been made, I will not repeat it. We also have issues to raise concerning the review and appeals provision whereby a parent may seek a review after six months. There is an obligation on a school to provide for a review every 12 months. While this is a good aspect of the Bill, there is an appeals mechanism under which an appeal can be demanded after six months if a parent is not happy. This will lead to difficulties in provision at school level and should be examined.

I will conclude on that point because serious questions arise in respect of those issues which have to be answered. I would welcome an opportunity to debate them.

Thank you. I welcome the TUI representatives, its president, Mr. Derek Dunne, and Ms Mary Grogan.

Mr. Derek Dunne

Like other groups, we very much welcome publication of the Bill which is significantly better than its 2002 predecessor. I will make some general comments to reinforce the issues raised in our submission. I hope to give one minute or so to Ms Grogan to make some comments on the register, in particular.

The key to implementation of the Bill is the provision of adequate resources. We are concerned that the rights promulgated by the Bill will be undermined if resources do not follow through. The provision of sufficient funding is essential to allow schools adequately cater for students with special educational needs. While we acknowledge resources will be made available, we are very concerned that there will be severe constraints on them. It is far from clear from the Bill which agencies may provide resources for schools. If provision is to be made for students with special educational needs, it must be through the allocation of additional funding to schools which will require budgetary and staffing allocations. That is the key point.

We agree with the other groups that there is a significant additional workload for principals and other staff in schools, particularly in respect of individual education plans. As has been said, some of the provisions in the Bill are extremely onerous on principals. For example, section 3 is excessive in the responsibility it imposes on principals in regard to statutory assessments.

The Bill should be amended to reflect more clearly the distinction between the functions of principals and special needs organisers. The professional and reporting relationship between principals and special educational needs organisers must be clearly understood by all concerned. We have a problem with the way this is put in the Bill and suggest that guidelines be drawn up by the council to define the relationship between principals, other school personnel and special educational needs organisers.

On resources, it is extremely important that adequate training is provided for schools. It is almost certain that many teachers not specifically qualified as resource or learning support teachers will rightly be required to teach students with special educational needs. This is inevitable and desirable in the context of a policy of inclusive education. Such training is essential to implement the Bill's proposals.

On definitions, we broadly support the distinction between special educational needs arising from disability and learning difficulties. The education system must also recognise and address learning difficulties which may not be comprehended by the Bill; dyslexia is a case in point. Schools must be staffed and resourced in a manner that ensures the availability of learning support services not encompassed by the Bill.

We welcome the designation of schools by the council as set out in section 9. However, this provision must apply equally to all schools and centres, including fee charging private schools in receipt of Exchequer funding. The Bill requires that no school in receipt of such funding be allowed characterise itself as unsuited to the enrolment of children with special educational needs. We recommend that the council keep records on all schools and centres, each instance of designation of a school under section 9 as well as appeals.

I will now hand over to Ms Grogan who will elaborate a number of points relating to the register.

Ms Mary Grogan

We thank the committee for giving us the opportunity to bring our recommendations and thoughts before it. Like previous speakers, I welcome the many positive aspects of the Bill but note that, unlike the 2002 Bill, the current Bill does not provide for the establishment of a register. We would like to see the co-ordination of databases and the utilisation of existing databases, particularly those of the Department of Health and Children, namely, the national intellectual database and the national physical and sensory database. To my knowledge, in many health board regions these databases are nearing completion, and fields may need to be added to meet the requirements of schools but this would not be an insurmountable task in the current era of technology. Bearing in mind that health board databases contain predictive data, this data will be a most useful planning tool and allow us to become more proactive in the provision of services.

The fact that we are living in a time of depleting economic resources and that all databases need to be updated means it is all the more important that there is co-ordination of databases. We urge cognisance of this point in view of the fact that the Bill rightly recognises that the closest co-operation will be between the Department of Health and Children and the Department of Education and Science. This will allow us to become more proactive in meeting the requirements of children and cease what has been in many instances a fire brigade response to their needs. It is just one issue but an important one.

We have agreed a list of questioners and certain members have concentrated on particular presentations. Deputy Hoctor will start.

I welcome the representatives and will confine my questions to the group representing AHEAD. While I understand its brief is largely concerned with the promotion of access to third level education, the presentation referred to the obvious need for supports to be made available during the early stages in a child's life. The group could almost become redundant if supports are not available to children at a young age. It acknowledged the supports already in place.

Most groups have brought to the committee's attention the prohibitive nature of the 18 years age limit and the fact that it excludes, to a large extent, access to third level education from the remit of the Bill. The group also mentioned lifelong learning which is not dealt with in the Bill because of the age limit. I would like to hear more from it on this issue. Is it happy that the supports introduced in recent years are sufficient not to be included in the legislation in the event of the removal of the 18 years restriction? I am surprised it did not focus more on the issue of lifelong learning and access for people with disabilities to lifelong learning programmes, IT courses and so forth. Would it like to see this more firmly grounded in legislation rather than the current loose availability? Thankfully, the situation has improved.

As a member of the ASTI, I welcome Ms Moira Leydon and support what she said to the committee.

I have a few questions for the HADD group which suggested a definition which appeared to be comprehensive. Other groups appeared before the committee yesterday which wanted to return to the previous definition. The NAMHI also brought forward a definition. Does the group believe there is a risk that a definition that seems to encompass almost everything might leave something out? Is it happy that it covers everything? I am concerned that there might be something that we have not thought yet of or that there is an impairment that should be included.

The INTO and others referred to early childhood education on which much emphasis is placed, yet we do not have an early childhood education system of any sort. Are the groups concerned that nothing will happen for the children concerned until they enter the education system at four or five years of age? Can they suggest any amendments to the Bill to deal with this? It is probably a broader question. It is likely that another Bill will be required to put that system properly in place.

There was much discussion yesterday about the role of boards of management and the link with the role of principals. I would be interested to hear the groups' comments on this. Greater emphasis is placed on principals in the Bill. Everything seems to revolve around the principal and the special needs organiser in the review of educational plans.

The person who will work with the children, however, is the teacher on whom there is little if no emphasis in the Bill. I would be interested to hear the groups' comments on this because the teacher will be making the plan. I am also interested in hearing their views on the training of teachers in this area. I spoke to a teacher during the week who is now working full-time as a special needs teacher. The teacher has received no particular training in this area and is about to start preparing educational plans without having been told or shown how to do so. I am sure it was part of the course but not to any great extent. Is this a genuine concern? How do the groups think it should be addressed?

Yesterday we discussed different needs. What is the teachers unions' experience in the classroom of children going from mild forms of disability to more profound disability? Do they believe there should be a specific reference to this, how it will work and be dealt with in the classroom?

I welcome the groups, particularly the INTO which my colleague gave a special mention. As a paid up member, I had better declare my interest. My questions are mainly for the ASTI. The submission by AHEAD and all of the submissions yesterday and today have referred to what equality of educational opportunity means for the disabled. Ms Heelan has said it does not mean equal treatment. Does it mean superior rights? This suggestion has been bandied about and I am anxious to hear a comment on it from all of the groups. Does it mean superior rights in terms of resources, implementation and overall direction and provision?

With regard to taking on board developments in neuroscience, the psychological sciences and so forth, what do the groups have in mind in that regard? One of the common themes in the submissions is the assessment and the people who should carry it out. Great emphasis has been placed on independent assessment. What are the groups' views on this? How realistic and practical is such a proposal? How meritorious would it be in terms of the interests of the child and meeting the concerns of the parents?

With regard to the education plan, who should be ultimately responsible for it? Concerns have been expressed by some groups that the Bill is not sufficiently directional or definitive as to who takes ultimate responsibility. Whom do the groups think should be directed by the Bill to take ultimate responsibility and do they think such a directive, if it were included, would be compatible and consistent with the partnership approach or spirit of the Bill?

A reduction in the summer holiday period was requested by representative groups yesterday to meet the needs and concerns of parents in relation to the continuity of education for children. How does the ASTI view this? How does it think its members would respond if such a proposition was made as part of an overall package to implement the provisions of the Bill? I wish to hear its comments on this too.

Much concern was expressed yesterday about the academic qualifications of teachers and their pedagogic skills. Does the union believe the existing level of pedagogic skills and academic training in the teaching profession is adequate to meet the needs of children with disabilities? If not, does it believe new teacher training structures should be put in place to target both of these areas?

I have looked at the written submissions and will look at the verbal submissions when the reports are published. I have a general question for the INTO. I noticed that it proposes an amendment in relation to the definition of disability. In paragraph 9 of its submission, it raised the issue of resourcing for the provisions in the legislation regarding professional development. This issue also arose yesterday. There has been disappointment with the Education Welfare Act as it has not been possible to implement it due to the lack of backup. Will the INTO propose amendments to the legislation so that the Department would be compelled to provide the necessary backup? A few people asked me after the last meeting what will happen when the hearings are over and I am sure other Senators and Deputies were asked that question also.

The next step is the Committee Stage debates in both Houses when there will be an opportunity for Deputies and Senators to table amendments to the legislation. If any of the groups represented here have suggestions on how to improve the legislation, it would be helpful if they circulated them to members of the committee.

I also welcome all the groups and I thank them for their submissions. I wish to address some questions to the TUI, but if I ask questions in a particular manner, the representatives should not interpret them as my own views. It is an effort to try to flush out this matter and to get our thinking clear so that we can all come to our own decisions and views.

Is the TUI advocating that all schools should be designated as open with total integration and access? The TUI representatives mentioned fee paying schools and I want to get a clear view that fee paying schools should not be excluded from designation, with which I agree. From my reading of it, the TUI is suggesting that if such a fee paying school was designated and parents wanted to put a child into that school, they should be allowed to do so regardless of having to pay fees. How would that work because I can foresee all sorts of difficulties with people specifying what sort of schools they want their children to attend?

I also wish to refer to the calendar year as distinct from the school year. In previous submissions, people indicated the need for continuous learning over the 12 month period. What is the view of the TUI on that matter in terms of schools where children with special needs are in attendance and where in the educational plan there is a view that the education should continue outside what is known as the school year into the full calendar year?

The TUI made a number of points, particularly with regard to the role of the principal and the special needs organiser. I accept those points, which were also made forcibly yesterday by the Association of Principals and Assistant Principals. A valid point was also raised concerning resources for the training of teachers.

The TUI representatives made comments on the extra burden that would be placed on principals and teachers directly involved in this area. If the current position is to continue, does the TUI feel that would mitigate against the education of children in the classroom who do not have special needs? We have heard mixed views as to what can or cannot be achieved in the 125 special schools and the stigma attached to people sending children to such schools. They may prefer to have them integrated in the full school system.

Taking what we are trying to achieve on a short, medium and long-term basis, does the TUI feel we would be better concentrating resources in special schools in the short-term? What is actually achievable? We can all aspire to a fancy Bill but what is the delegation's opinion as representatives of teachers who will be implementing this legislation? Does the TUI think that in the short-term we should concentrate on special schools and work towards this in the medium to long-term?

I take the points that have been raised about records and databases. I have looked carefully at section 38 and some modifications could address the TUI's needs. Is the TUI advocating access to those databases by teachers?

I welcome everyone and thank them for their submissions. It was suggested that attention deficit disorder should be mentioned in the Bill so there is no doubt that it is covered. That ties in with the unsatisfactory definition of educational disability. I want to play devil's advocate in putting a question about dyslexia and related disabilities or difficulties. Is it the groups' concern that if these terms are not put into the Bill they will not otherwise be considered for the allocation of resources or do they think that they should be tied in with all forms of disability? For example, if resources were guaranteed for such learning disabilities, would the groups be satisfied that the Bill should be more tightly framed towards other disabilities? Is it to copperfasten resources that the groups want such disabilities included in the legislation?

The second issue relates to those resources. Do the groups believe that a wording can be inserted to copperfasten the allocation of resources so that the Bill can be implemented? While some tweaking of the Bill is required, the major concern we have heard relates to the allocation of resources to make the legislation work. It was mentioned that additional funding needs to be provided and there is a concern about resources and which agencies would allocate them. Given that the Minister for Education and Science is highly unlikely to tie himself down and the Minister for Finance is even more unlikely to do so, is there a justification for including - this is not my own opinion, I just want to get feedback - all types of disability in the Bill or would it be better to use political pressure to ensure resources areprovided in other areas, such as dyslexia and ADD?

The co-ordination of databases between the Department of Education and Science and the Department of Health and Children was mentioned. Would it be the view of the various groups, particularly Ms Mary Grogan's, that the Bill should include a post to liaise between both Departments with special powers to ensure that resources are properly allocated between them?

I thank the INTO for pointing out the discrepancy between section 12 of this Bill and section 13 of the previous one. It is a subtle and important difference that I had not spotted regarding the reference to "as determined by him or her" in relation to Ministers. We will propose amendments to that reference.

I support what the TUI said about schools not being allowed to exclude themselves. There is a danger that certain schools in an area - it might be one school - would be expected to take all the special needs children, while the other schools will exclude themselves. That is an important point.

Ms Leydon referred to the fact that timescales like a month are unrealistic. If we do not have timeframes we might not get the resources so I am interested in the unions' views on this issue. We may not be able to copperfasten the absolute provision of resources where they are needed. We would like to do that, but we may not get the Minister to agree to do so. I would like to hear the groups' views on whether timeframes are useful in attracting resources and ensuring that they are provided.

I am conscious that Deputy Stanton is a member of one of the unions present or almost a former member now.

I am still a member of the TUI. I welcome the groups. They made a distinction between special education needs arising from disability and other difficulties. The explanatory memorandum, in respect of section 3, states, "There is a risk that legislation like this Bill could lead to over-identification of children with learning difficulty as children with educational disabilities." I am coming to the opinion that, perhaps, children with learning difficulties, such as dyslexia, ADD, etc, are being specifically and expressly excluded under the Bill and this point is borne out by the explanatory memorandum.

Section 2 refers to the "provision of education to a child with special educational needs shall take place alongside the provision of education to children who do not have such needs unless that is inconsistent with . . . the effective provision of education for children with whom the child is to be educated." My interpretation of that provision is that children can be excluded. As Ms Leydon said, these children may be difficult to deal with in the classroom if the resources are not provided. I am aware, as a former teacher, that if there is child in a classroom who is very disruptive, it is extremely difficult for the teacher, the other students, the individual in question and his or her parents. There is a conflict in this regard between teachers and parents, which is a matter at which we must look.

Some of the schools principals who were present yesterday stated that it might, perhaps, be better if SNOs were given more powers or could play a greater part in terms of assessments, etc.

I wish to apologise to the TUI, with which I had many dealings in the 1980s. I neglected to acknowledge the presence of its representatives earlier. The question I posed to the other two teachers' unions is also directed at the TUI. It did not emanate from politicians, but from the parents' groups that were here yesterday.

I thank the Senator for posing that question because I would otherwise have been obliged to pose it at the end of the meeting. There are approximately nine minutes remaining in which to conclude the meeting. I beg the indulgence of the staff of the committee and members in order to extend that somewhat.

Ms Heelan

I wish to respond to Senator Fitzgerald's question about what constitutes equal treatment and whether such treatment is equal or superior. If one has a child who is visually impaired, giving them a book is absolutely no good. Such a child is at a huge educational disadvantage. Giving him or her a computer with a voice synthesiser or with a scanner by means of which they can scan and then read a book actually only makes their level of participation equal to that of other students. Similarly, any resource or accommodation that is put in place for a student with a disability does not provide them with anything extra; it merely enables them to deal with the huge disadvantage caused by the impact of their disability. That is an important point. There are those who believe these children are getting extra resources but they are not. Without the extra resources, students with disabilities would be excluded. Unlike other children, they do not have the wherewithal to be included; they are on the outside and the resources to which I refer enable them to participate. It is essential that the children receive the supports identified in the individual training plan.

The individual training plan is the key measure in this area and will ensure that resources are not wasted and that children will obtain the exact support required to match their educational disadvantage. It must, therefore, be measurable. There is an important aspect missing from the plan. A number of speakers referred to the role of the teacher, who is the educator in the classroom and who knows the child. One of the problems with the Bill, which, I suspect, was probably based on a medical model, is that everyone is looking at the children as the problem and placing the emphasis on them to change. There is nothing in the plan to indicate what the children can expect to change in the schools. What accommodations will be made in classrooms or what changes will be made in terms of books and the language used therein, the resources available and the environment?

If one considers this matter from the perspective of the social context, many of the barriers exist in the school environment. I am not blaming teachers, principals or anyone else; that is not the issue. There is a system in place that is geared towards non-disabled children. Disabled children have not been included up to now and we, therefore, need to explore and examine the system because, otherwise, we will not include students with disabilities.

I am concerned about the Title of the Bill because, as stated earlier, there are thousands of students in the higher education sector who are disabled. The Title "Education for Persons with Disabilities Bill" does not refer to these people and it should be reconsidered. I wish to express my disappointment at the fact that there are no university Senators present and that the Irish Federation of University Teachers does not appear to be involved, which should not be the case.

As far as I am aware, none of the university Senators is a member of the committee.

Why not? Surely this is their domain. They have not shown much interest in disability in the past.

It is not really my job to make excuses for them; they are just not members of the committee.

Ms Bernadette Mahady

Deputy Enright and Deputy Gogarty inquired about the definition. As Ms Geraldine Graydon said, the bottom line is that we want there to be no doubt whatsoever that children with ADD will be entitled to the extra resources. The model we provided in our original submission is based on the US legislation. The US reviews its legislation every couple of years and the model is workable, which is why we proposed it. However, we will not go to the wall in respect of this matter. What we want to ensure is that ADD is covered.

With regard to Deputy Gogarty's question, the only way we can be guaranteed that the resources will be provided is to have it written into the Bill. That is our bottom line. How else can we know that the resources will be made available? The Department issues circulars every year and it could be included in one in a particular year and not included the next. That is why we are pressing for it to be specifically mentioned in the Bill. We hope that the definition we provided covers all categories. The circulation of our model to other bodies might be a solution to that problem.

A number of bodies raised the role of teachers. We identified the fact that there is a deficiency in the Bill, which does not refer to the role of the teacher. The question of training was raised and we would support moves in that regard.

Another question which arose was that of a register. We made a submission to the Department in respect of the previous Bill. Many of our members were concerned about the register and we have welcomed the fact that a register is not included in the current Bill. We have no objection to records being kept. However, if there was to be any change in the Bill, we would press for the privacy of children to be protected. As Ms Geraldine Graydon stated earlier, ADD is not a nice disability - it exasperates parents, teachers, schools and other children who have to work with ADHD children. In one sense, labels are good but, in another, they are bad. A label is what attracts resources. However, we must protect the children. They already stand out and we do not want to emphasise that fact further. Whatever records are kept, they should either not contain any identifiable names or it should be expressly stated that they cannot be released under any circumstances other than those in which they are relevant to the council's records.

Ms Graydon

With regard to the definition, as parents of children with dyslexia, ADD and autism, we know from bitter experience that if it is not stated that they have a right to an education, they will be excluded. This will be used by many people across the education system. What happens is that assessments are carried out on our children and the professionals will not include the diagnosis and, therefore, we are left in limbo. The children do not get the help and support they require and the parents are being misguided. Many parents are running around like headless chickens asking whether their children suffer from ADD, autism, behavioural problems or if they are language-delayed. People might have two or three children with difficulties and that is why I spoke yesterday about the core mobility problem. We are inclined in this country to give a primary diagnosis. A child could have Down's syndrome, but he or she could also be autistic or have ADD. Following a primary diagnosis, however, the child could be channelled into the services that deal with Down's syndrome which are not autistic-proofed or ADD-proofed. It would be like going to the doctor, being told one has cancer and being treated for epilepsy.

It is the same scenario. Nobody wants to label their children, particularly with ADD. We often get it thrown in our faces that we are jumping on the bandwagon in order to jump the queue and, therefore, we go for these labels. However, we are not because we know from bitter experience we must label our children. With regard to the Senator's question on equal opportunities, we want equal, not superior, rights for our children across the board. However, we would like to extend that to equality of participation and outcome.

The vast majority of special schools cater for senior level schools but there are no qualifications. Children in those schools do not have access to leaving certificate or applied leaving certificate programmes. Statistics show that almost 92% of people who have gone through special education do not have qualifications and that is appalling. We fully back the INTO and this issue must be addressed. The rights of people who can gain from an education are never impinged whereas we are always pushed down a cul-de-sac.

There is always a great difficulty about who is responsible for the education plan. However, this is simple because it is written into the plan who is responsible. It can be the teacher, the principal, the psychologist or anyone else and that can be written into the plan. There is no great difficulty as to who is responsible.

Ms Leydon

Ms Graydon made an eloquent statement regarding ADD, the difficulties of getting it recognised and the developmental nature of many disabilities. There is a concept of multiple disability and that underlines the concern that the definition in the legislation must be sufficiently nuanced to take account of development in the sciences. The core issue is that the definition must be inclusive, rather than exclusive.

A number of questions raised by members are illuminating in that they implicitly ask what is the job of schools nowadays in terms of whether it should be open all year or whether it should be prepared to take in everybody. This debate must come to the fore in Ireland. Structures, regimes, etc, have been examined to a certain extent but a more philosophical look needs to be taken at the work of schools and teachers. Many of the difficulties we have had relate to society not addressing the changing role of the school and changing expectation of teachers as educators. However, that is another day's work.

I refer to professional development. The secret to a quality teaching force involves motivation and growth in professional expertise. Therefore, it would not be good to pile on the training of teachers at the beginning of their careers because teaching is an evolving career. One learns as one goes. The teacher unions, through the conciliation and arbitration framework, have made repeated substantiated and elaborate proposals to introduce paid educational and sabbatical leave for teachers so that they can, as they grow in their careers and meet new challenges, have access to the training and expertise that will enable them to do so. We can provide copies of those presentations to the committee.

Deputy O'Sullivan raised the issue of deadlines and I agree we should not be without them. However, we felt the deadline of one month in that section was impractical, for example, where a primary school principal receives the assessment at the end of May or June and there are annual leave or other issues. Perhaps "not later than three months" would be more appropriate. That is the only deadline with which we have a concern because it is impractical given the nature of the school year.

The nub of the issue is who is responsible. The responsibility for the development of the education plan should rest with the special needs organiser on balance and the responsibility for the implementation of the plan should rest with the school principal and board of management. That is quite a distinction. The principal's expertise is in bringing the team and resources of the school together to be deployed in a manner that can meet needs. If that nuance is made, we may be able to insert wording in the legislation that ultimately will be more effective.

I have grouped the questions into two areas, one of which is how the legislation will impact on a macro level and the other is its practical implementation. Nothing stands in isolation and we are conscious that for the first time in the history of the State, a significant number of Acts in the area of education have been introduced. This is another piece in the jigsaw and we are concerned that it all links together properly. That is why we raised the issue of a definition of "disability" initially. It is defined under the Education Act 1998 and the Equal Status Act 2000. If we are to get it together properly in terms of handling education for people with disabilities, we need to ensure all the pieces knit together on that basis. We will propose amendments during the passage of the Bill.

We are concerned about the tightening of the definition and the change in the way resources will be allocated to schools, particularly under sections 12 and 13. We are also concerned about the interaction between Departments. If the Department of Health and Children and the Department of Education and Science are to be involved, a co-ordinating committee should be established. The last thing we need is the passing the buck syndrome where one Department says it is the other Department's problem and so on. For example, section 6(5) provides that the special education council can come up with a list of the services required for a particular child but it may decide the Department of Health and Children must interact and provide some of them. The practical operation could be that the council says it is a Department of Health and Children operation, which will then say it is the responsibility of the council. A delay of three months is built into the Bill. Who will provide for the child during the three months the Departments are arguing over who should provide the service?

There is a substantial change in the earlier sections of the legislation regarding the balance of rights between pupils and that has been broadly welcomed by our members. We need to ensure that balance is brought into effect and children are treated equally.

Deputy Enright referred to the early childhood education issue and it will probably require more legislation. The Education Act refers to the establishment of the early childhood education agency, which is up and running, but further legislation will be required to develop the system properly. However, there is provision for children with disabilities in early age through the visiting teacher service. It is limited but valuable. We have always believed in the early intervention model.

The Education Act enshrines parental choice at primary level. Parents are making choices as to where they send their children, whether it is a local school or a special school and so on. Schools have integrated children with special education needs for a long time and we do not want to undermine the right of parental choice. An argument will always be made regarding resources but parental choice is a fundamental principle that needs to be put in place.

With regard to implementation of the education plan, one of the phrases used is "shared responsibility is no responsibility." However, this must involve shared responsibility. It would be a failure to give overall responsibility to one set of professionals, whether that is teachers, psychologists or SNOs. This has to be a team approach and it cannot be done in any other way.

I wish to reiterate that we are concerned that a bureaucracy can be built up. At present, schools are driven to distraction with the amount of paperwork associated with special educational needs. I am sure Members, no more than ourselves, receive many telephone calls in this regard. We could be driven to distraction by bureaucracy in the implementation of the legislation. We need to ensure the resources reach the schools and that the children benefit rather than the resources being taken up in a constant stream of appeals and reviews.

I wish to emphasise again two points regarding the legislation. One is the workload on principals in general, of whom the vast majority at primary level teach. It is all very well imposing new responsibilities and workload on people. It is not the workload as such that is the problem, rather the practicalities of how it will be done in small schools that do not have appropriate backup and resources.

On the issue of summer provision, we have had significant discussions at our annual congress and elsewhere on this and the continuance of provision for children. Many of our people, especially in the special education sector, are already involved in summer provision during July. There are summer camps and educational programmes. It is an issue we are willing to discuss. It is not closed off. We have had many positive developments in this regard. Training and professional development must accompany full implementation. We welcome the timeframes. Practical timeframes are important because they will be a driver in ensuring resources are given to schools by the Department of Education and Science.

On the issue of the university Senators, I must defend one in particular - Senator O'Toole - who is a member of our union. During the passage of the previous Bill through the Seanad, he achieved a number of substantive amendments, one of which, section 12, related to money. It has been removed and we would like it reinstated.

Mr. Carr

I cannot let the comment pass that there is a stigma attached to a child going to a special school. That is not true. Parents make choices about their children and there should be a continuum of provision from an ordinary classroom right through to special schools. They are centres of excellence for many children who need access. We can never stigmatise children because of the school they attended. Otherwise, we could, for example, stigmatise children on the basis of the secondary school they attended. We should get rid of the phrase "special school" and call them academies. No one would downgrade them then.

The fact that the definition changed from the 2002 to the 2003 Bill is based on the belief in the Department of Education and Science that to have stuck to the original definition meant additional resources. The only reason there is a new definition is to reduce the resources. The children who will suffer and fall off the trap, so to speak, as a result of the two definitions will be those with borderline and specific learning disabilities and those with emotional difficulties. We must ensure we revert to the original definition because, if it is right, a parent will have a right to pursue education on behalf of his or her child, as the O'Donoghue and Sinnott parents did, and the resources will have to follow as of right and not at the Minister's whim.

Mr. Dunne

I will pick up on the point about summer holidays. We would have a difficulty with that - there is no point in fudging it. We would not favour an extension into the summer holidays for mainstream schools. However, that said, we have groups in our membership who work beyond into June for certain groups. It is not something to which we would be completely opposed. Under the right circumstances and conditions, we would certainly consider it, but it would create difficulties for mainstream schools and we would oppose it. However, perhaps we could look at it in a different way outside that suggestion.

In terms of fee paying schools, the point has been made. It is very simple. We believe all schools should accept their responsibilities and that children with special needs should not be directed to particular schools that will stigmatise them and so on. The point is very straightforward.

In terms of qualifications and training, certainly the inservice and professional development of teachers at second level is extremely poor after they are qualified. I would go so far as to say it is a shambles at present in terms of what is available to teachers once they begin teaching. It is well known and has been proved time and again that education is under-funded and this is an area that needs substantial funding.

In terms of the lack of emphasis on the teacher, the key to many provisions in the Bill is giving teachers confidence to be able to deal with the needs of all children. That is done by information, inservice training, etc. That is the key to it. If teachers have confidence, there will be an openness and it will work. When that confidence is absent, barriers are erected. I will leave it at that. There are many other areas with which I could deal, but I will just make those brief comments.

Ms Grogan

On the point about the database, I fully empathise with Ms Graydon. I abhor the idea of a label on a child, but we need to know about them and their location. That is why we moot the idea of a co-ordinated database. On the issue of confidentiality, we appreciate the issue of data protection and the database obviously would have very limited access. From the education perspective, it would only be the special needs organiser and only in so far as it can be used as a planning tool. I have some awareness of the problems the Department of Health and Children has with its database.

The database would be predictive and involve planning, something we have not had in education heretofore. We go from day to day. There is a strong possibility that a child who enters second level with a moderate general learning disability will need pre-vocational and vocational training. That needs to be planned for and it has not happened heretofore.

The idea of logging the data on the database is an emotive issue for parents. It is bad enough from the point of view of parents who find it difficult to cope with the here and now to have to spend an hour filling out data forms and being asked where they think their child is likely to be in five years time and what services he or she is likely to need. If it is to be repeated by another agency, namely, the Department of Education and Science, it is regrettable to say the least. At a time of depleted resources, it is in all our interests to be as economical as we can with their use. Databases are an invaluable tool and go a long way in providing a continuous seamless provision, which is to what we all aspire.

I thank everyone for their presentations, for answering the questions and for their suggestions. If there are amendments they believe would improve the legislation, they should feel free to bring them to our attention.

Sitting suspended at 1.18 p.m. and resumed at 2.23 p.m.

I am pleased to welcome representatives of the Irish Wheelchair Association, Disability Federation of Ireland, National Disability Authority and Dyspraxia Association. Members will be aware of the format at this stage. There will be a five minute presentation from each of the groups from whom we have already received detailed presentations. Perhaps the representatives could emphasise the important points and I ask them to bear in mind that when the Bill has gone through the Dáil, it will come to this committee for Committee Stage. We are considering how the Bill might be amended to make it as effective as possible. If representatives have specific ideas, so much the better. Even if we do not deal with everything today, there will be many opportunities to have interaction with individual members or to submit amendments.

Members of the committee have absolute privilege. However, representatives appearing before it do not have the same privilege extended to them. 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, in such a way as to make him or her identifiable. We will begin with the presentation from the Irish Wheelchair Association.

Mr. Olan McGowan

I thank the committee for the opportunity to make this presentation. We are making our presentation solely from the point of view of members of the Irish Wheelchair Association which represents people with limited physical mobility. I have summarised the presentation into four main points. The first is the abandonment of life-long learning, which is a big concern. The Bill is entitled the Education for Persons with Disabilities Bill, but it should be entitled the Education for Children Bill. Attention is not paid to people over 18 years of age. Due to physical disability, many of our members would not have had an opportunity to avail of mainstream education in the first instance. Some people in mainstream society may do the leaving certificate at 19 or 20 years of age. We are concerned that there is a very firm cut-off point in this instance. Due to communication difficulties, many people with disabilities might require longer to communicate. It might take them three or four years to prepare for the leaving certificate. Apart from the cut-off point of 18 years, third level and adult education appears to be ignored.

The second major point is the emphasis on integrated rather than inclusive education, about which we are very concerned. There is an impression throughout the Bill that the person who has the problem must integrate into the existing system rather than the system adapting to their needs, which would be a more inclusive model. Section 2(b) causes serious problems. It indicates that education will be integrated as long as it does not interfere with other students who do not have disabilities. This is of grave concern to me. It could be widely interpreted and it could rule out people on the basis of speech and communication difficulties, appearance or the number of pupils with disabilities in one classroom. It is also subject to much cultural interpretation and people’s prejudices, depending on the principal of the school or individual parents. The appearance of many people with disabilities might be argued to put off other students. I am very concerned about this aspect. I am aware what the section is trying to achieve, which is not invalid. I am concerned, however, about the prominence given to it, which is very dangerous. Section 8(2) states what the content of the education plan shall include. The educational plan is very focused on what pupils cannot do rather than looking at the educational environment.

The third major point relates to the term "educational disability". I have a problem with the wording "educational disability" rather than with the subsequent wording. I emphasise I am not saying this out of any politically correct tyranny. I know many members of Government cannot stand the importation of American political correctness so I do not want to offend anyone. I am not trying to be a PC tyrant, but I do not think that "educational disability" is particularly descriptive. People like Professor Stephen Hawking would not be too happy with the term "educational disability". It appears that if one does not fit into the current system, one has an educational disability, for which I would qualify. I would prefer wording along the lines of an alternative educational requirement or need. While this may sound very ultra PC, I believe it is much more descriptive.

The lack of involvement of people with disabilities in the council for special education causes me huge concern. In his press release of 16 July, the Minister for Education and Science said that the national council would include those with a special interest in or knowledge of education of children with disabilities, including people with disabilities. It is of major concern that this has not been delivered on. Even in a consultative forum, people with disabilities and their representative organisations are sidelined.

My last major point relates to the provision of resources, which will always be an issue. The problem is that even after allocating the departmental budget, the Minister for Finance has much say in terms of the Bill. I have outlined the various sections and I draw attention to sections 12(3) and 17(2).

I also wish to refer to points which do not appear in the Bill which I recommend should be included. The first is disability awareness training for everyone involved in providing integrated education. Disability awareness training is imperative and should be built into the mainstream curriculum. The second refers to external requirements. Although the Bill focuses on the educational environment, there are external requirements to enable people to get through the front doors of schools and avail of education. These include inadequate transport infrastructure, lack of a personal assistance service and after school backup and the incomplete educational backup services outside school. Additional backup services will be needed outside school.

Thank you. That was very helpful. We move now to the Disability Federation of Ireland for its presentation.

Mr. John Dolan

I concur with the Chairman's opening remarks that this is the start of a process which will be continued in both Houses over a number of phases. I welcome the fact that a committee such as this is meeting up to 50 organisations and I underline its importance.

This issue goes to the heart of deciding what people's further life chances and opportunities will be and how they will be able to benefit from all the other supports and services our country has to offer. We are not simply concerned with the cost of making extra provision for a group of people, but with investing in unlocking a service which exists and which is, generally, of great benefit to the majority of people, making it available to another group in our society and meeting their needs and rights as children and young people.

As we are a federation of many organisations across a range of disability sectors, our submission does not deal in detail with the various sections of the Bill. We put two core points before the committee. First, we question the capacity of the Department which has the lead role in this legislation to carry it out. For example, there is interesting reading in the report commissioned by the former Minister for Education and Science, Deputy Woods, in October 2000 on the operation of the Department. There is particularly interesting reading in the section of the report that deals with special education. I have been involved in the disability sector for almost a quarter of a century and I have an understanding of and relationships with a range of Government Departments. We have found the Department of Education and Science the least proactive and that experience is shared by many organisations and groups who try to deal with issues of education and support for children. This is not a criticism of the legislation but of the vehicle that will drive it and carry it out. Is it fit for the role the Oireachtas will give it in passing the legislation?

Second, the intention of the legislation is laudable and good but what is the fit between that intention and the mechanisms being put forward in the Bill? We have already heard Mr. Olan McGowan describe some of the issues that come under that heading. For example, parents and people involved in the education of students without disabilities do not wait until a student is 17 to start thinking about where he will go when he is 18. However, this legislation seems to assume that is good enough for people who have extra educational needs. Section 2(b) has already been mentioned and I underline the points made regarding it. That section appears to throw responsibility back onto the individual and the family. If one structures supports in any service around people, those supports will not impact negatively on other people who use that service. Supporting and resourcing are the issues at the heart of this question. More and more people who have mobility impairments can now use public buses in Dublin because the service has been reconfigured to support them. It is not sufficient to say a service cannot be provided simply because it would have a negative impact on other children in a school. One must ask why there might be a negative impact on the education of other children. It may be because the supports are not there for the student with a special need.

Sections 19 and 20, which deal with the establishment of the national council for special education and the national forum, refer to the Minister consulting with a number of groups. School management, parents' associations, teachers' representatives and others are mentioned but there is no mention of consultation with the organisations which have sent submissions to this committee, some of which are represented here today, and which have been trying for decades to make it possible for children to go to school. This seems to be an omission. Is there a sense in the Department of Education and Science that parents' organisations and disability organisations are not partners in this process? That partnership needs to be written into the legislation.

When one Government Department or State agency relies on another to carry out some of its functions, this is done under an agency arrangement. The Department of Education and Science has to stay in the middle of this matter, as the lead Department, and must take responsibility for making whatever agency arrangements are necessary with health boards and other authorities. I am afraid the Department might say it would be happy to do something or other but that it cannot get a response from a health board, for example. Education is at the nub of this legislation and its execution must be driven by the Department of Education and Science.

The next contribution is from the National Disability Authority.

Ms Christine Whyte

I am delighted to address the committee in relation to the Bill. The National Disability Authority is a statutory authority to advise the Minister for Justice, Equality and Law Reform and it is on that basis that we have made our submission.

We welcome the definition of a child given in the Bill but we request a provision to extend the education period for a further three years in appropriate cases and we restate our position that there is a need for separate rights based legislation to address the education of adults with disabilities in the context of life-long learning.

The term disability is not defined in the Bill. A new term, "educational disability", is introduced and we feel this may restrict the eligibility of some children with special educational needs, as currently interpreted, to support provision in the future. If the definition in the Education Act was used, this term would be unnecessary and it would ensure that all children with special educational needs are supported.

The implications for parents and families is the other major area we wish to address. While we welcome the focus on mainstreaming, we prefer the term "inclusion" to "integration" and we want to highlight some concerns. There will be a continuing need for specialised placements for some students and this should be recognised. Parents currently have choices and the Bill should protect the level of choices currently available for parents. On designating the school, it is unclear on the procedure for protecting the rights of parents and school choice in the process.

Section 2, which has already been referred to, represents balancing the right of the individual with the common good but there is no guidance on how that might be weighed in practice. We have concerns about the marginalisation of parents during the school experiences of the child. For example, there is no requirement that a principal inform the parents when he or she forms an opinion that a child may have a special educational need. There is not an automatic copy of an assessment report for parents; they must request a copy. There is no requirement that parents are informed of a plan, if amended, on transfer from one school to another. There should be greater recognition of the role of parents in the various transitions through educational life for children with disabilities and when the child is of an appropriate age and stage, he or she should also be involved centrally in the planning process. Planning for post second level education needs to take place from age 14 onwards.

The other key areas are identification, assessment, planning and review and we are looking at them in a combined way. There is no right to an independent assessment of need or an independent review of services provided on outcomes attained. Access to many of the proposed assessment services is dependent on the opinion of a professional but there is no guidance as to what comprises an opinion and the linkage of assessment to an opinion runs the risk that services will be inconsistent throughout the country. We recommend the Bill require that all staff contributing to the education of persons with disabilities should be appropriately qualified and have ongoing in-career development.

On the educational plan, where an assessment establishes there is a disability, an education plan should flow from the assessment. However, the opposite is the case in section 3 which requires that a school based plan must be prepared and implemented prior to the assessment. The Bill requires the plan to include a statement of the child's abilities as well as his or her needs, and that is welcome. However, the review of the plan makes frequent reference to failure and, as drafted, potentially excuses failure. We are concerned at that approach. A further difficulty with the plan is that the mandatory duty to implement it is not balanced by an enforcement procedure in cases of non-implementation. It is left up to parents to police the non-compliance and to appeal the failure to an appeals board.

We recommend that a neutral independent review should be undertaken which would track outcomes, whether positive or negative, and review the outcomes in an objective manner. There is no independent tracking system outlined in the Bill, which is a major failure.

On resources, the statutory promise of resources is welcome but it is diluted by the provisions referring to available resources. This is not a rights based approach and an entitlement to services in certain defined circumstances should not be substituted for the right to education.

We welcome the fact the assessment process refers to a holistic assessment of the child but the provision of support services is restricted to supports and resources which the child may require for his or her education. It is critically important that these are delivered in a co-ordinated way. It is essential that the forthcoming disabilities Bill addresses co-ordinated service delivery across all dimensions. If not, it runs the risk of promoting fractured services for people with disabilities.

On appeals, we welcome the mediated process, as proposed, as a form for resolving differences but there are many routes to appeals in the Bill. There would not be a need for a number of appeals if the Bill provided for an independent assessment and review service. The Bill is silent on the provision for a student while the appeal is in progress and we believe that should be addressed taking account of the impact on the student's education of delays in progressing appeals.

The success of the envisaged system will depend largely on effective co-ordination at all levels, and not just across departmental levels. That needs to be referred to in the Bill as well as the fact that ultimate responsibility for the education of people with disabilities needs to reside with the Department of Education and Science.

On the national council on special education, we recommend that specific provision is made in the Bill for the inclusion of persons with disabilities. The Bill should incorporate provisions which require the maintenance of a comprehensive records system which would include those in receipt of services, those awaiting services and assessments and those deemed ineligible for services. There also should be a record of the timeframe between application for, grant and delivery of support services.

On omissions from the Bill, the following matters should be addressed in the final draft: appropriate advocacy services, access in the widest possible sense - that is, physical, communications, information and reasonable accommodate - and services for students through their preferred language, as under the Education Act. There are no enforcement procedures and they should be incorporated into the Bill, acknowledging the accountability of parents, students and the State, as is the position under the Education Act 1998. We request a review of the legislation after five years.

I thank Ms Whyte. The final presentation in this session is from the Dyspraxia Association.

Ms Orla Stanley

The Dyspraxia Association represents approximately 200 members countrywide and is in contact with many more parents, adults and children with dyspraxia, DCD, as well as teachers and professionals. The association is often the first port of call for information when a diagnosis has been given or is being sought. We are also members of the Disability Federation of Ireland and, having consulted with our colleagues prior to this, we believe our views are fully reflected in its observations and concerns in the detail of the Bill in its present form. However, we would like to focus on the specific concerns of the Dyspraxia Association, the DCD group we represent, many of which may coincide with those of fellow organisations in the special needs area.

As members may not be familiar with the terms dyspraxia or DCD, I will give them a brief description of the disorder. Dyspraxia comes from the word "praxis" meaning doing and, simply, it could be called a disorder of doing but it is actually much more complex. The DCD part of the description stands for developmental co-ordination disorder - it is the preferred term internationally providing more a descriptive title and we currently use both. It is basically a difficulty of thinking out, planning and carrying out sensory motor tasks. It is associated with poor physical co-ordination in gross and fine motor skills. Other difficulties include delayed acquisition of speech, social and communications problems. It is now recognised as a specific learning difficulty and is part of a spectrum, which may be more familiar to members, that would include ADD, ADHD, Asperger's syndrome and dyslexia which often overlap. Some children would be described as being on the autistic spectrum.

The group we represent would generally have dyspraxia as their primary area of difficulty. They are usually of average or above average intelligence. It affects three to four times as many males as females. There is no published research on its incidence in Ireland, but in the UK it is documented in the region of 5% to 7%. Basically, it has a specific set of indicators and crosses over with other disorders. It is not new but it is not as well known as some of the others which may be more familiar to members. It often goes undiagnosed or misdiagnosed and unsupported.

Our primary concern, and one of the main reasons we are availing of this opportunity to address the committee, is to ensure that dyspraxia, DCD, is recognised as a disorder, a dysfunction, a learning difficulty or whatever label is required to obtain such recognition within the legislation. As an organisation representing parents of children with special education needs, we, too, would be most concerned at the narrow definition of the term "disability" as set out in the Bill. However, we are working on the premise that our children will be included in any forthcoming legislation. We need to have dyspraxia recognised as comprising both physical and neurological elements and our experience to date would suggest that education bodies, schools, health boards, etc., can often be less than supportive when parents look for help often due to the fact they have not heard of the condition. We have regularly received calls from schools and State organisations seeking information in the absence of it being available from professional sources.

While the focus here is on education, as has been referred to by my colleagues in the other organisations, the question of the Departments of Health and Children and Education and Science working together is unavoidable and not fully addressed in the Bill. It is imperative that a definition, particularly of our difficulty, is agreed. The proposed national council for special education must, therefore, work closely with the Department of Health and Children to agree on the multi-disciplinary approach outlined in the Bill, with parents, obviously, in the first line of involvement. That is another key issue which has been raised.

Where difficulties are suspected, a child needs to be assessed quickly without obstacles on request from parents, teachers or other professionals who may have concerns about a child. Early intervention is most important if these children are to avail of and succeed in mainstream education. The previously recommended general assessment of all children - I am referring to NEPS - within the school system during infant classes would greatly assist in identifying children who are challenged as well as saving time, money and resources at a later stage. Related to this point, there are grave shortages of available personnel in specific key professions. Educational and clinical psychologists and occupational, physio, speech and language therapists are key to this as are resource teachers and classroom assistants. Presumably, this applies to many organisations as well as our own.

Access to places at third level and practical training opportunities must be reviewed. The aspirations of the Bill will not be fulfilled without addressing these issues. It is a key aim of ours that specific modules on dyspraxia DCD should be included immediately in all teacher training programmes. A point which was not included in our written submission and which is difficult to raise is the anomalous position of children with specific learning difficulties who attend private schools. This must be addressed. In Ireland there is the unique situation where for some, and admittedly it is for some, a relatively affordable private school system operates alongside the State system, particularly at second level and parents of children with special needs in private schools find it doubly difficult to find the supports they need.

A description of the specific difficulties in the classroom is set out in our submission, together with proposals to aid children in mainstream education. The purpose of this exercise was not to catalogue the litany of obstacles and lack of resources currently experienced by the children and parents with whom we are in contact. We wish the committee to be aware that there are many "outs" for organisations within the education and health systems and these will continue if the Bill proceeds in its present form without some of the amendments suggested by our organisational colleagues.

Typically, having received a confirmed diagnosis of dyspraxia there are few or no services available, depending on location. A couple of notable exceptions would include Enable Ireland, who run the Cosmo programme in the eastern region and will be making a submission to the committee, and the DCD unit in Cork, the only dedicated unit in the country for which a group in Cork is currently lobbying to keep open and supported on a permanent basis. They have successfully incorporated the multidisciplinary team approach aspired to in the Bill, although long waiting lists and resources are an issue with those organisations.

Many families around the country end up directing their own therapies, perhaps waiting years on a health board waiting list or paying privately for a sporadic service. These usually bright and inquiring children often do not receive the extra assistance in school because they are not considered to be in the lower percentile of need. That is the kind of language we hear on a regular basis. The more frightening question is how many more children are not diagnosed at all. We regard this legislation as a means of tackling such obstacles within the education system and giving these children and all children with disabilities or special needs the opportunities that should be their right.

I thank you for the opportunity to address the committee and we wish the members well in their work on this important legislation.

We have agreed a panel of those who wish to ask questions, individuals who have taken particular care with each individual presentation today and previously. I have indications from several members that they also wish to ask questions. I will endeavour to accommodate most of them.

I welcome all the delegations to the committee. Some of my questions are specifically directed to the Irish Wheelchair Association and I will follow with more general questions.

I was interested in the comments on the withdrawal of lifelong learning. It is one of the biggest issues that is not included in the Bill. I am particularly concerned because this is the first year that it has not been included in the Department of Education and Science's five key aims. I share the speaker's concerns as to the direction being taken with that issue. In terms of the members of the Irish Wheelchair Association, there are only one or two references in the Bill to physical disablility. Does the association regard the Bill as doing anything for its members? If I understand the submission correctly, the key issue is access to educational establishments and being able to use them as distinct from the learning issues. Is the Bill going in that direction in any sense?

Some speakers dealt with the issue of assessments. One speaker took it as a given that the Bill has a multidisciplinary approach. It is not a given in the Bill because it is dependent on the opinions of either the health board, the council or the principal of the school. All along I had the impression that the Bill would involve definite multidisciplinary teams and would specify definite key people. Would the association regard that as preferable? Leaving anything to discretion is not the best way to proceed. It can also be dangerous.

Ms Stanley made a reference to private schools and the extra difficulties for parents. I ask her to expand on that statement. Does she mean in terms of how they admit students? I was interested in the point that there is nothing in the provisions for the student while the appeal is in progress. I do not think it was referred to in the submissions and it is an important point. Are any of the groups concerned about the difficulties that might arise in the transition from primary to post-primary?

I also welcome the delegations to the meeting. My questions are directed to the Disability Federation of Ireland. Its submission began with the caveat that the federation has had difficulties with the Department of Education and Science and it refers to the credibility problem. I cannot allow that statement to go unchallenged. Other groups have appeared before the committee and have told me that they have very good relations with the Department and more so than with the Department of Health and Children. They stated that the special needs section of the Department has been more than helpful to them and they have been well facilitated. Whether they have got what they wanted is a separate matter but according to those groups that facilitation exists.

The committee has been over this ground with many other groups. The transport issue has been raised today, including whether that should be included in an education plan. Is it the view that it should be included? Many groups have queried the definition. The Irish Wheelchair Association is the first group to dispute the Title to the Bill. Its point of view is interesting. Will the association suggest an alternative title? Should there be separate legislation for the needs of over 18s or should it be incorporated in the Bill? Are their needs distinct and do they require separate legislation?

I welcome the groups and I will direct my questions mainly to the National Disability Authority. The authority states in its submission to the committee that the Long Title to the Bill should incorporate the words "the equal effective right to education for all". The Bill contains the words "shall have the same right". What inadequacy does the authority see in the Bill's wording?

With regard to definitions and interpretations of terms, the Bill defines the child as a person less than 18 years. The authority's submission regarding the 2002 Bill was consistent with that but it has now added an addendum which says that a further three years should be added. Why is the authority suggesting an extension in appropriate cases and why three years? What does the authority consider to be the appropriate cases and who should adjudicate on the appropriateness of particular cases? It calls for a separate rights based legislation to address the education of adults with disabilities in the context of lifelong learning. This issue has been raised in various ways over the last two days. Why not have that arrangement for the over 18s in the separate legislation rather than add on the three years?

The submission did not contain any reference to needs and aspirations of persons with disabilities for third level education. What are the views of the authority on how these should be addressed? On the membership of the national council, the submission referred to the need for representation of persons with disabilities. Many groups have different views on who should be represented on the council. I suggested to some groups that if representation were to be as wide as that, it would involve an increase in membership way above 12 which might make the council unwieldy. What is the authority's view?

With regard to the education plan, I understand the authority's submission to state that it is not happy about where the ultimate authority lies and that there is not enough directional provisions in the Bill with regard to the education plan. In the opinion of the authority, who should have the ultimate authority with regard to the education plan in the overall scheme of things? If the authority is suggesting a categorical directional provision, would such a directional provision perhaps be inconsistent or incompatible with the spirit of the Bill which appears to be one of partnership?

On the issue of curriculum and teacher training, the authority is concerned that there might be a mismatch in terms of teacher qualifications meeting the curriculum needs. What does the authority regard as the lacunae and how would it bridge the gap? Should there be new models of teacher training in terms of academic qualifications, new pedagogic skills that are required for primary and secondary teachers? Should it be an ongoing process of in-service teacher training and development? Members of the delegation spoke of balancing competing rights. Are they talking about new directional provisions in the Bill not currently in existence?

I welcome the delegations. As very little is known about dyspraxia, especially in Ireland, and because of the overlap that seems to exist with other hidden disabilities, when it is first identified how can progress be monitored in correcting the difficulties that exist? I have spent most of my time as a teacher looking at the behavioural problems mentioned by the Dyspraxia Association of Ireland. Many if not most of the problems could be attributed to what we would term an ordinary pupil. Clearly there are problems, first in identifying and then monitoring any corrective process or - for want of a better word - treatments that may follow.

The problem of responsibility between the Departments of Health and Children and Education and Science arises again. Often the education process is found to be totally wanting in the follow-up, while the health services are slow in adopting measures. Often also what we would call the ordinary GP would be totally dismissive of such problems to both the parents and the child, and would not recognise the need for an urgent response. At present identification is in its infancy here. Apart from the incorporation of the association's proposals in the Bill, is there any way this can be highlighted? Many professional people in the service could not pinpoint any one of these behavioural problems as coming from this aspect.

There is a great education process for the people delivering the service at present, but the only way it can be monitored closely is by highlighting it within teacher training. As in many other cases, early identification is an important prerequisite. Is inclusion of these proposals in the Bill sufficient for this necessary educational process or will it require greater involvement from groups involved in early and middle education?

I call Deputy Crowe even though I know his group has not arrived.

I welcome all the witnesses. The Irish Wheelchair Association referred to the abandonment of the concept of lifelong learning, as have a number of groups. The word "person" has been replaced with "child". The Disability Federation of Ireland, the Irish Wheelchair Association and Downs Syndrome Ireland raised fears about the opt-out clause resulting in people being excluded. I agree with the social model and the right approach is to say that the person has a problem and not the system. The Bill is clumsy and many of the sections need to be worked on.

Although there is some disagreement, some of the groups suggested that section 2(b) should be eliminated. What are the views of the witnesses on that? In that section, one of the weaknesses of the Bill is the failure of the National Council for Special Education to address teacher training for dealing with those issues. There is a clear need to train teachers to communicate better and include children with disabilities in classroom activities. Teachers must play a role in - for want of a better word - demystifying disability for other children. I am intrigued by the suggestion of the Irish Wheelchair Association that training for people with disabilities should also be considered. If there is time I would like the association to expand on that.

There was support from groups for eliminating the age limit of 18 years. The National Disability Authority made a good point about support for children if and when suspended from school. It has not been proposed by other groups and I do not know how practical it is - perhaps the NDA could expand on it. The authority asked for an independent review to be carried out with the education plan rather than letting the principal do it - I am sure the principals would agree. They were critical of the fact that they were mentioned about 40 times in the Bill. Who would carry out that review? Would it be done by the council or by a more independent group? The same question applies to part 25 of the paper. Is the association calling for the creation of a new body in the legislation? The NDA also mentioned resources, which represent one of the key aspects. This has the potential to be an excellent Bill or it could be a monument to good intentions.

I thank you for allowing me to speak, Chairman - I was not on the original list. I want to concentrate on the definition again. In the past two days, it has come up repeatedly with the different groups. The committee needs to get feedback from the witnesses as to the best definition that could be used. Nobody seems to be happy with the definition proposed in the Bill. I am particularly interested in the views of the two umbrella organisations, the Disability Federation of Ireland and the National Disability Authority, both of which appear to favour the definition in the Education Act 1998.

The submission by the Disabilities Legislation Consultation Group refers to the definition in the Equal Status Act, which is almost the same as the definition in the Education Act 1998 but contains an extra part. It also quoted the definition from the strategy for equality, as did another group today. Another group quoted the definition in the relevant United States disability legislation. The National Association for the Mentally Handicapped of Ireland provided a simplified definition yesterday. Although we do not need answers today, the committee would welcome feedback from all groups on a definition of disability that can be used across legislation so that there are not different definitions in different legislation.

I welcome the groups and thank them for their detailed submissions, which required considerable work. I draw their attention to the explanatory memorandum, which draws a distinction between children who have learning difficulties and children who have special educational needs arising from a disability. It states: "There is a risk that legislation like this Bill could lead to over-identification of children with learning difficulty as children with educational disabilities". There appears to be a continuum and, perhaps, an effort to draw the line along it on the basis that people on one side have learning difficulties and would, therefore, be excluded from the Bill, whereas people on the other side have an educational disability, as defined, which will be included. That appears to be the thinking involved.

There is also a needs-based social construct model, of which people will be aware. This should be considered in conjunction with what Ms Stanley has said in relation to alternative educational need. I would welcome the views of the delegation on the question of learning difficulties versus disability, in the context of people with disabilities having learning difficulties while people who may not have disabilities, as such, have learning difficulties.

The issue of assessment has come up repeatedly. In the Bill, it appears that the Minister for Health and Children will have a role in drawing up the guidelines for carrying out assessments but once that is done, there appears to be no provision in the Bill for an appeal on the assessment itself or the appeal procedure. There is provision for appeals on the individual education plans, but not on the assessment. Accordingly, if the Minister for Health and Children raises the bar to a certain level in so far as assessment is concerned, that is final. I invite the delegations' views on that aspect and on the importance of advocacy for parents and how it might operate, which has also been a recurring issue.

We will return to each of the groups for responses, although it may not be possible for them to address all of the questions which have been raised. They should feel free to come back with suggested amendments or particular ideas or concerns they may have during the interval from now until the Bill completes its passage through the Oireachtas.

Mr. McGowan

I will try to address each of the issues raised as far as possible, taking them in chronological order. On Deputy Enright's point, we feel somewhat left out. I believe the Bill was drafted because of a constitutional imperative which did not include people with physical disabilities and that is reflected in it. On the transition from primary to post-primary and even third level education, I had not thought of that very good point. I believe structures could possibly be built into the Bill to allow for a smooth transition in that regard.

I will address the comments of Deputies Andrews and O'Sullivan together. I had suggested the term "alternative educational requirement", partly because it will be a difficult task to get two disability organisations to agree a definition of "disability". As a representative of a disability organisation, I readily acknowledge that. It might be useful to leave out the word "disability" entirely as I am not sure it is particularly relevant and it would avoid arguments about various terms such as "educational disability". In corridors outside of this meeting, people have spoken of a definition of disability which I have not actually seen - "educational disability" is the term used.

I do not necessarily have a major problem with the wording subsequently used, but I would like to have clarifications given to organisations such as the Dyslexia Association Ireland and the Dyspraxia Association, to make it clear that their members are included. However, I am not qualified to comment on the legal aspects of that. My problem did not relate to the wording but, rather, to the actual term. I believe it can be all-encompassing by omitting the term "disability" entirely. On Deputy Andrews's reference to alternative educational needs or requirements, while it may sound rather politically correct, it is more descriptive than comprehensive.

Deputy Crowe referred to section 2(b), with reference to interfering with the effective provision of education for children. I have a major concern in that regard, but that is not necessarily to say we are dismissing the need for special education. There should possibly be a choice. There may well be disagreement between parents and principals as to the capacity to educate any one individual in any particular environment. I do not suggest that everybody should be either included or not included - there is a place for both - but I have an issue in relation to its prominence. Many of the organisations called for its complete removal, which I would possibly favour. I do not defend the clause in any way - I consider it extremely clumsy and dangerous. However, I recognise the intention behind it and would not necessarily agree with those who suggest that everybody can be educated in an inclusive environment. I have no firm view on the matter and, until somebody provides evidence one way or another, my position, based on experience of representing our members, is that there is no reason they cannot be included.

With regard to disability education and training, the reason I specifically referred to "both sides" is that I believe a certain etiquette would have to be established for people with disabilities entering into an inclusive environment. Given the way we have educated people with disabilities to date, it will be a new experience for them. Even in the matter of using a communication aid, I fully recognise the possibility that this might have the effect of slowing down a class. Accordingly, there should be a certain etiquette to accommodate the needs of everybody involved, all of them having alternative needs.

I wish to refer to one further point, although it was not addressed directly to us, about the issue of alternative education to cover lifelong learning. As it is difficult enough to get one Bill on the table, I would prefer that we now bite the bullet and include everything in this Bill.

Thank you. We will now move on to the response from the Disability Federation of Ireland.

Mr. Dolan

There were a number of specific questions to DFI, including those from Deputy Andrews in particular. With regard to our comments in relation to confidence, or lack of it, in the Department, we have cited a number of matters, including a report commissioned by a former Minister for Education and Science and our own experience and that of our organisations over the years. Our comment is not about individuals working in the Department but, rather, about the system as we see it and its fitness at this time.

On the issue of transport in relation to the education plan and its necessary supports, as distinct from pure education, our view is that the Department with lead responsibility has to be at the centre of ensuring that the requirements are delivered. It may be said that transport is a matter for another Department. However, just as a warm and safe building is integral to education, so also is school transport.

On the question of having separate legislation or integrating other matters into the Bill, including the position of those over the age of 18, there is a particular issue about excluding people when they reach 18 years. In general, it is taken that people finish second level at or about 18 years but, for many reasons, that is not a valid assumption in relation to the cohort of people to whom we are referring, or at least some of them. I would like to think there could be some elasticity in the Bill in regard to this. I am inclined to agree with Mr. McGowan's comments. Following the efforts made by many people over a long period of time to progress this matter, let us now get the best out of it while noting other things which need to be done. In saying that, I have given a practical answer rather than a principled one.

Turning to some other points raised, Deputy Enright spoke of the primary to post primary situation. We also need to consider those who move from one school to another. Such issues need to be watched carefully in this legislation.

Senator Fitzgerald, who raised some issues relating to the council, has advocated a partnership approach. Organisations working in the disability sector support parents and families in this area and other areas. Why should they not be expressly seen as stakeholders in the partnership? They have to be drawn into partnership in an obvious manner.

Deputy Crowe raised the question of section 2(b). It is important that one should not see the family or the individual as the problem, as other issues exist in the classroom. Matters such as accommodation, resources and protocols have been mentioned. We can do many things if we set our minds to it and if we are prepared to work at it.

Deputy O'Sullivan raised the definition issue. The DFI and the NDA favour the definition contained in the 1998 Act. We note the comments made by the Deputy. There is not much point in saying much more about the matter at this point. The key issue that has arisen as a result of the submissions and the contacts we have had is that the definition is flawed. I appreciate that definitions are needed in legislation - members of the committee are gurus in that regard.

We wonder about definitions too.

Mr. Dolan

One must have a definition that is broad, but which does not encompass everybody. It is not the case that everybody who fits within the definition automatically needs support. The definition has to be sufficiently broad to ensure that those who need support come within its ambit. Some young people do not need ongoing support. A young person with epilepsy, someone who has suffered from a bad attack of asthma, or a child with dyslexia might need a barrage of support at a certain point. This demand might level off or the child's parents might be able to deal with it, however, and the child in question might then need very little support. The definition has to be able to take account of the factors I have mentioned. We will have to make certain accommodations within it.

Deputy Stanton spoke of advocacy in relation to parents. Voluntary organisations, such as the Irish Association for Spina Bifida and Hydrocephalus and Enable Ireland, represent an important stream in that regard. They have been working in this area and they are part of the support fabric for families. They should be seen as part of the advocacy.

Ms Whyte

I would like to speak about the question of definitions and to link it with Senator Fitzgerald's query about an equal effective right to education. The problem is that a new definition of educational disability is being introduced. This is opening a new debate about the definition. The National Disability Authority considers that the use of the definition in the 1998 Act would copperfasten the provisions of that Act. It would underline the reasons why we need a new Act to address the needs of persons with disabilities. We need to ensure that provisions are in place to ensure the right to education. Such provisions are necessary to ensure an equally effective right to education for people with disabilities. This is why we mentioned this matter in our submission.

The question of persons over the age of 18 is at the nub of the National Disability Authority's submission. We have examined the degree to which the needs assessment in the 1998 Act will dovetail with the needs assessment in this Bill. This is a critical and fundamental issue. Needs assessment is needed at regular stages, with regular reviews throughout the life of a person with a disability. The reviews should result in a plan which should, in turn, lead to co-ordinated service provision. There is a real danger that we will have parallel systems that do not join up. Mr. Dolan has spoken about the fact that a chronological cut-off age is not suitable for persons with disabilities, who will have had gaps in their education, or who may reach milestones later than others. It seems that a provision for those over the age of 18 will be included in the Bill. I urge the committee to examine this area and the degree to which the two needs assessments dovetail.

There is a requirement that the membership of the National Council for Special Education be balanced according to gender. The National Disability Authority asks that there be a similar balance in respect of persons with disability. There does not necessarily have to be an increase in numbers, but people should be asked to seek nominees with disabilities, just as they seek nominees of a certain gender.

I was asked about the ultimate authority in relation to education plans. Such plans should arise from assessments and should be prepared on a multi-disciplinary basis. We consider that the special education needs organiser should be the ultimate arbitrator, as he or she has an objective and detached relationship with the child in his or her school.

I invite my colleague, Ms Mary Meaney, to discuss the issue of teacher training.

Ms Mary Meaney

I would like to address the issue of teacher qualifications. I suggest that many lacunae exist in this regard. Teachers are involved in two sectors - primary and secondary. There was no preparation of teachers in the area of special needs education in all five colleges of education before 1998. There has been a very small amount of preparation in respect of primary level teachers since 1998. This preparation amounts to less than 20 hours in some of the colleges. It is obvious that the vast majority of primary and secondary teachers qualified long before 1998. Most teachers, therefore, have no special needs qualification whatever. This is one of the major lacunae of which we speak, although there are others.

Teachers are required to have at least five years' experience before being appointed as a principal. It is clear that this means that all principals qualified before 1998. There are 3,100 principals at primary level and slightly over 900 principals at secondary level. They have no qualification in respect of special education if they have not availed of post-graduate courses. A very small number of principals have pursued this option. This is another huge lacuna. There is a huge imbalance between the qualifications of teachers and the job they are requested to discharge under this Bill.

A further lacuna exists in respect of curriculum issues. All members of the committee are aware that there is a general curriculum of 23 books at primary level and that numerous books are used at secondary level. They are used for all persons. There is only one specialist curriculum for students with learning disabilities and it is in draft form at present. There is no specialist curriculum for other groups. Teachers, students, parents, boards of management and all concerned are placed in an impossible situation as a consequence of the requirement to teach children with a wide variety of special educational needs without any official guidance. Teachers perform this role extremely well, when one considers the lack of support they receive.

I would like to discuss the situation at second level, which is even more drastic and horrific than that at primary level. The vast majority of trainee secondary teachers attend universities where there is no special educational faculty. They have absolutely no qualifications. There are some specialist teachers at primary and secondary levels, such as learning support teachers and resource teachers. Some initiatives have been undertaken by the Department this year in respect of post-graduate qualifications for such teachers. We will be involved in the launch of an initiative at a university next Monday. Such initiatives are welcome, but they relate to an extremely small number of teachers. I understand that 150 places have been provided for the entire country. The fact that pupils will not have a service while their teachers are attending these courses constitutes a further lacuna - a further mismatch between qualification and delivery. I thank the joint committee.

The final response will be from the Dyspraxia Association of Ireland.

Ms Stanley

My colleague, Ms Gallagher, will answer some of the questions put to us earlier.

That is fine.

Can I address Deputy Enright's question? She asked about the private schools issue, which encompasses two areas. If parents choose to send their child to a private junior school, the child will not have any access to resource teaching hours or special needs assistance because the school is outside the State funding system. That issue has been raised by a number of parents. Involved in the move from primary to post-primary level is the issue of the resources available if one chooses a private school and whether one advises the private school of a child's disability. If one does, the school may decide it does not want to have the child within the school environment. There are questions to be asked in relation to the phenomenon of private schools and the Minister for Education and Science, Deputy Dempsey, has views on the matter. Our concerns are as outlined.

Deputy Andrews asked a question in relation to the Department of Education and Science and stated that a number of the other groups which have come before the committee were very positive about their relationship with it. Our experience has not been particularly positive. We have found it extremely difficult to get any response to written communications as individual parents or as representatives of a parents' body. We have also failed to obtain responses to a number of issues which we have raised with the Department, but we continue to write to officials.

Senator Burke asked how one identifies whether a child has dyspraxia or specific problems which are unrelated to having a learning difficulty disability. A number of teachers have contacted us directly to highlight the fact that there are children in their classrooms with specific problems. The association is aware that it is where the Dyslexia Association of Ireland was ten to 15 years ago in terms of recognition. The Department of Education and Science has listed dyspraxia as a special educational requirement and children are entitled to resource teaching hours etc. Our issue centres on early intervention. The earlier intervention takes place in the school environment, the less likely it is that a child will have problems later. There is also the issue of the link with the Department of Health and Children. Deputy Enright rightly referred to the need for a multi-disciplinary approach, which is hugely important to all the bodies in terms of access to health and educational professionals, including educational psychologists and resource teachers.

We have seen what is probably only the tip of the iceberg in relation to recognition of how wide the problem is. As a voluntary association with limited resources it is difficult for us to raise awareness. We have a student completing a masters degree in special needs and she is conducting an extensive research project for us. We hope that by January 2004 we will have research detailing the incidence of dyspraxia, which will provide a basis on which to assess what is needed in terms of services countrywide.

I thank the witnesses for sharing their knowledge, expertise and experiences with the joint committee. The information shared will be very useful when it comes to considering the various aspects of the Bill. I thank the staff of the joint committee for undertaking the huge logistical operation of bringing more than 30 groups before us in two days. I also thank the other staff whom I have detained longer than I should have on each occasion. If delegates have further ideas which they want to share, they should feel free to do so. The joint committee will resume this element of its work next Thursday morning at 10 a.m., but at 3 p.m. next Monday we will meet the Minister for Education and Science and, subsequently, the parliamentary legal advisor in connection with the Laffoy commission.

The joint committee adjourned at 3.15 p.m. until 3 p.m. on Monday, 29 September 2003.