Wednesday, 11 June 2003
Autism Services: Statements.
I thank Members of the Seanad for giving me the opportunity to outline details of some of the initiatives that have been taken in recent years by this and the previous Government to enhance the level of support available to people with autism. The main areas on which I intend to speak relate to the health-funded services for people with autistic spectrum disorders and the educational services that come within the remit of the Department of Education and Science.
The philosophy underpinning the planning and delivery of services to people with disabilities, including those with autistic spectrum disorders, is that people with disabilities should be given the opportunity to live as full a life as possible and to live with their families and as part of their communities for as long as possible. Factors influencing current policy include the health strategy, Quality and Fairness, which was published in November 2001, and Government policy on the mainstreaming of services for people with disabilities.
Policy must also be underpinned by appropriate structures that facilitate access to and delivery of support services. As part of the planning structures in place, health boards have been working at regional and local level with families of people with autism and service providers to identify needs and plan responses that will meet them.
The Department of Education and Science makes educational provision for children with special needs in three ways: in special schools, special classes attached to ordinary schools, and integrated settings, in other words, integrated into mainstream classes. The main basis for provision is the assessed need of the individual child. The policy of the Department of Education and Science is to achieve as much integration as possible and also to take account of the views of parents.
Some 108 special schools and more than 500 special classes are attached to ordinary schools. Both special schools and special classes enjoy lower pupil-teacher ratios, the ratio depending on the specific disability for which the school or class caters. These schools and classes are also supported by the allocation of special needs assistants and additional capitation funding.
Since the Government decision in October 1998 that all children with special needs in the primary system should receive an automatic response to their needs, there has been significant expansion in provision for children with special needs in integrated settings in ordinary national schools. The significance of this expansion can be gauged from the increase in the number of resource teachers which, between 1998 and now, rose from about 100 to more than 2,300. Similarly, in the case of special needs assistants, numbers have risen from about 300 to almost 5,000. In recent years and in line with these developments, the Department has also increased provision for in-career training in the area of special needs.
The Department of Education and Science also provides other services for children with special needs, such as a home tuition service which is designed to cater for children who, because of their disability or illness, are unable to attend school for prolonged periods. In addition, the Department provides special equipment for children with special needs.
There has been significant investment in support services for people with physical, sensory or intellectual disabilities and those with autistic spectrum disorders. Since 1997, additional funding of about €555 million has been invested in these services, of which almost €340 million was allocated to services for persons with autism and those with an intellectual disability. Between 2000 and 2002, for example, the additional funding provided for these services was used to put in place, in addition to a range of other services, more than 900 new residential places, about 380 new respite places and about 2,000 new day places.
More than €15 million has been invested in health-related support services for children with autistic spectrum disorders and those with intellectual disability. This includes diagnostic and assessment services, early intervention, home support and outreach support to children of schoolgoing age. Some €6.35 million of this funding was specifically targeted for services for children with autistic spectrum disorders, with the balance for both the autism and intellectual disability services.
There has been an increased emphasis in the health services on in-career training, some of which is provided by staff working within the services. The Department of Health and Children and the Eastern Regional Health Authority have provided funding towards the development of an e-learning module for health professionals which is being developed by Trinity College.
The Department of Health and Children also supports the development, in partnership with the North Eastern Health Board, ERHA, Aspire, Irish Autism Alliance and the Social Communications Disorders Group, of a computerised social skills programme for adolescents with Asperger's syndrome or high functioning autism. It is intended that this training programme, when completed, will be made available to professionals and parents to assist them in working with this group. Training for families, including siblings, is also an area the health services would like to see expanded.
While this major new investment programme over recent years has undoubtedly made a significant impact on the level of service provision, it is accepted that a sustained programme of further investment is required if we are to provide the level of support identified as required to meet the needs of people with disabilities. In addition to resources, other factors must also be in place to deliver quality and effective services designed to meet individual needs, some of which I will seek to address later.
There have been a number of developments in the provision of an automatic response to children with autism. Since 1998, the Department of Education and Science has created some 115 classes for children with autism in ordinary national schools and special schools. These classes operate with a minimum staffing of one teacher and two special needs assistants for every six children. However, that level can be augmented depending on the needs of the individual children.
The Department has also funded a number of stand-alone units that are not integrated into ordinary national schools. Support for these units was committed on a pilot basis. The first was established in Cork in 1999 and is known as CABAS Cork. Since then, further projects have been established in Kill, County Kildare, and Kilbarrack in Dublin. The Department's inspectorate has undertaken an inspection of these units as well as of other autism specific provision in the system to inform development of future policy and to assist in the development of best practice.
The report of the task force on autism, published by the Minister for Education and Science in late 2001, contains many recommendations which, when fully implemented, will further improve provision for both children with autism, high functioning autism and Asperger's syndrome and their parents. The principles associated with the task force recommendations would also apply to children with other special needs and their parents. It has been widely acknowledged that until the automatic response decision in 1998, the level of resources applied to special needs was not what it should have been. However, as in the case of the health services, the issue is not just resources. There have been weaknesses in the structures for the delivery of special education services and also in the wider legislative framework within which such services are delivered.
As already stated, the provision of additional resources, while extremely important in the context of delivering an enhanced level of support to people with autistic spectrum disorders and other people with disabilities, is not the only response required. There is also a need to look at the structures which underpin the delivery of those supports.
It is essential that my Department can access data at national level in respect of people with disabilities who are accessing health services or may have a need to do so in the future. A national database can inform planning, service development, the prioritisation of service needs and resource allocation at national, regional and local level. The information from the national intellectual disability database played a key role in accessing the additional funding which has been made available in recent years. My Department, in conjunction with the health boards and the voluntary sector, is currently implementing a national physical and sensory disability database. While some persons with autism who also have an intellectual disability are included on the national intellectual disability database, it does not contain information on this group as a whole. While the database provides information in respect of the level of services being provided and current and future needs, it does not identify persons with specific disabilities such as Down's syndrome or autism. Its principal role is as a planning and monitoring instrument.
Initial work was carried out during 2002 on the development of an information system which would give a level of information on the needs of persons with autism similar to that already available from the national intellectual disability database. This work is being continued during 2003 and consultation will take place with the health boards, service providers and persons with autism and their families.
My Department will work closely with the Department of Education and Science on the information requirements of the new National Special Education Council. There has been, as I have already stated, a significant programme of new investment in services, including early services. The health boards are in the process of developing regional autism diagnostic, assessment and support teams. These are at different stages of development. The availability of these teams, together with input from other areas of expertise, will facilitate the move towards more uniformity regarding diagnostic and assessment services in general.
One of the major difficulties facing the health service in delivering support services to people with disabilities and those in other areas of the service is the shortage of certain professionals such as speech and language therapists, occupational therapists, physiotherapists and psychologists. Progress has been made in this area and also in implementing the recommendation made in the Bacon report on manpower planning. Significant progress has been achieved in boosting the number of therapy training places in line with the recommendations of the report, Current and Future Supply and Demand Conditions in the Labour Market for Certain Professional Therapists, prepared by Dr. Peter Bacon and Associates and published in June 2001. The report concluded that a major expansion was essential in the numbers of therapy professionals over the next 15 years, comprising an increase of over 150% in occupational therapists and a fourfold increase in speech and language therapists.
On 29 May 2002, the Ministers for Education and Science and Health and Children announced some additional therapy training places in speech and language therapy and occupational therapists. The University of Limerick is to offer 25 places on a Master of Science programme in occupational therapy and 25 places in speech and language therapy. NUI Cork is to offer 25 places on a Bachelor of Science programme in occupational therapy and 25 places in speech and language therapy. NUI Galway is to offer 25 places on its programme leading to a BSc in occupational therapy and 25 places in speech and language therapy. The colleges have been working intensively to plan the provision of the speech and language and occupational therapy courses. Efforts have been made to recruit services and personnel and the recruitment of staff is well advanced. There has also been communication with the relevant professional bodies to ensure that the proposed programmes are accredited.
Following the joint announcement in May 2002, the Bachelor of Science in physiotherapy in the University of Limerick commenced in the 2002-03 academic year with an intake of 28 students. It is envisaged that the masters programmes in speech and language therapy and occupational therapy at the University of Limerick will commence in June 2003 with an intake of 25 into both courses. These courses are accelerated conversion courses, the first graduates of which will be produced in two years. NUI Cork has made provision for a CAO entry in September, 2003 for both the Bachelor of Science course in occupational therapy, which has 25 places, and the Bachelor of Science course in speech and language therapy, which has 25 places. The option of a programme to allow students with suitable backgrounds to enter into the second year of a degree programme in October 2003 is currently being considered.
NUI Galway plans to commence its intake of students into both programmes – the Bachelor of Science course in occupational therapy, with 25 places, and the Bachelor of Science course in speech and language therapy, with 25 places – in September 2003. NUIG is also investigating the possibility of accepting suitable students into the second years of the programmes in September 2003. In addition, the universities which are already offering degree courses in these specialities have increased the number of places being offered in the past number of years. The occupational therapy course in Trinity College increased its intake from 30 to 35 students in the 2000-01 academic year and further increased its intake in the 2001-02 academic year to 41 students. A total of 40 students were accepted in 2002-03. The speech and language therapy course in TCD enrolled 26 students in 2000, this increased to 32 in 2001 and 29 were accepted in 2002.
Intensive efforts have been undertaken to improve staffing levels in speech and language therapy and occupational therapy, both at local and national level. One development has been the continued implementation of the recommendations of the report of the expert group on various health professions – developments to date include the introduction of common pay scales for the therapy professions and pay structures. There have also been changes to the career structure, including the introduction of the post of clinical specialist, and many other posts have been upgraded from basic to senior level in line with the recommendations of the expert group. Management grades have been restructured and the focus on broader management issues has increased.
Other developments have been the undertaking of a concerted overseas recruitment drive on behalf of all health boards, the introduction of a fast track working visa scheme for health and social care professionals, the streamlining of procedures for the validation of overseas qualifications and the planned significant expansion in the number of training places in speech and language therapy and occupational therapy referred to above. The success of these measures is reflected in the increase in the numbers of speech and language therapists and occupational therapists employed in the public health service over the three-year period to the end of 2002.
In 1999, for example, 371 occupational therapists were employed by the health services, but three years later in 2002 there were 642 occupational therapists. This represents a percentage increase of 73% over three years. In 1999 there were 345 speech and language therapists; three years later, in 2002, there were 460 employed by the health boards, which represents an increase of 33%. A concerted recruitment drive for the therapy grades is currently being conducted on behalf of all the health boards by the Northern Area Health Board. This has resulted, to date, in the recruitment of 20 occupational therapists and eight speech and language therapists.
Following the publication of the report of the joint review group on psychological services in the health services in March 2002, a major priority for the Department was to promote an integrated and co-ordinated approach by the health boards to its implementation over time. This applied, in particular, to the major recommendations of the report relating to the organisation and management of psychology services, entailing substantial increases in the number of principal and director level psychologist posts.
Given the key role of the Health Boards Executive in fostering collective working and progressing organisational change and development in the health service, the Department secured the agreement of the executive to work with the directors of human resources in the health boards towards the implementation of the recommendations in the report. The current position is that the directors of human resources are in the process of giving individual consideration to the recommendations contained in the report and to how their boards might propose to proceed with the implementation process over a period.
My Department, together with the directors of human resources in the health boards, is prioritising support for the implementation of a key recommendation of the joint review report relating to human resource planning through the provision of a substantial number of additional postgraduate training places in clinical psychology. This has resulted in a threefold increase from the end of 1999 to the end of 2002 – from 26 to 83 – in the number of trainee clinical psychologists employed in the health services. This development in enhancing graduate output will help maintain an improved balance between demand and supply in human resource and service provision.
The Department remains committed to working on an ongoing basis with health agencies, educational providers and the education authorities to ensure adequate provision of training places in clinical psychology, consistent with the medium-term human resource requirements of the health services as detailed in the joint review group's report and the important recommendations on investment in training and education detailed in the action plan for people management published in November 2002. A particular priority is to ensure the best return, in terms of graduate output, on the significant financial resources currently being invested in the health services to support post-graduate clinical psychology training. Consequently, the Department, together with the health boards' directors of human resources, is examining the current model for post-graduate psychology training, with the objective of supporting training provision on a planned and sustainable medium-term basis.
At present, there are approximately 105 clinical psychologists undertaking postgraduate training in the State. Over 60 students are enrolled on the Psychological Society of Ireland's clinical psychologist postgraduate training diploma. A total of 24 are enrolled on the doctoral programme in clinical psychology at Trinity College – 12 in first year and 12 in second year – and 19 are enrolled on the doctoral programme in clinical psychology at UCD – ten in second year and nine in third year. It is understood that both the National University of Ireland, Galway, and the University of Limerick have plans to introduce doctoral programmes in clinical psychology in 2003, with an intake of a further 20 students in total. There has been a significant increase in excess of 40% – an increase of 121 to 412 over the three years to the end of 2002 – in the numbers of fully qualified psychologists working in the health service. This has contributed to a significant increase in the volume of psychological services provided.
In addition to measures to increase the supply of psychologists through the implementation of the recommendations of the joint review report, other efforts have been undertaken to improve staffing levels in the psychological services, both at local and national level. Relevant developments include the recruitment of psychologists from overseas by the health boards, the introduction of a fast-track working visa scheme for health and social care professionals, the streamlining of procedures for the validation of overseas qualifications and the devolution of responsibility for recruitment of basic grade psychologist posts to health boards from the Local Appointments Commission. Ongoing pay enhancements through the implementation of the recommendations of the public service benchmarking body will make a further contribution to reducing current vacancy levels by increasing the attractiveness of employment as a clinical psychologist in the health services.
The Department of Education and Science has been aware that its capacity to respond administratively to demands for special education services has been limited in some respects. For this reason, as Senators will be aware, the Department has decided to establish a national council for special education. The intention is that the council will fulfil a number of functions. First, it will provide advice to the Minister on responses and provision for children with special education needs. In addition, it will provide a local presence on the ground in the form of special education needs organisers who will be charged with drawing together provision for children with educational needs. The council will also provide a vehicle for dissemination of information and guidance on best practice in relation to responses to special needs. It is intended that, associated with the council, there will be an appellate structure to enable parents to appeal in relation to responses to the special educational needs of their children. It is also intended that the council will be established initially by an order under the Education Act 1998. The council will subsequently be catered for in primary legislation when the new education for persons with disabilities Bill is enacted.
The Education for Persons with Disabilities Bill 2002 which, in the lifetime of the previous Government, had been passed by the Seanad, was not reintroduced by the current Minister, Deputy Noel Dempsey, who was anxious that a further period of consultation would be facilitated to allow interested groups and parties to make submissions on the legislation. That process was completed and the new Bill is now at an advanced stage of interdepartmental consultation with a view to early approval by Government and publication.
The Government regards these more fundamental structural and legislative reforms as the key to enabling improvement in delivery of services for children with special needs and their parents. It is intended the new education for persons with disabilities Bill will cover the range of issues including assessment, responsibility for provision, appeal processes, individual education plans and so on. In drafting the Bill, the Department of Education and Science is attempting to clarify how the needs of individual children should be met, both by the education and health services. Clearly the Departments of Health and Children and Education and Science need to work together at the macro level with a view to ensuring that we have "joined-up Government" in terms of development of policy in respect of responses and the resourcing of services for children with special needs. Equally, at local level, there are issues whereby health boards, service providers and education services can operate in an integrated way. Clearly, the Department of Education and Science's capacity to work in an integrated way on the ground locally is very limited at present. For this reason, the national council for special education will be particularly critical in enabling integrated responses to be pulled together at local level.
In this regard, the National Educational Psychological Service, NEPS, has been doing a significant amount of work in terms of producing procedures and structures which will enable close co-operation to take place between NEPS and the health boards. In establishing new structures and putting in place agreed operational protocols, particular regard will be given to information dissemination so that parents of children with autism will not have the additional burden of not knowing where to turn for particular services.
I emphasise that while many advances have been made in recent years, much still remains to be achieved. However, progress can best be made through partnership, whether this is at national, regional or local level. While both the health services and the educational services have worked together over the years to deliver appropriate support to children with special needs, these efforts will undoubtedly be greatly assisted by the new legislation, the establishment of the National Council for Special Education and the increased availability of allied health professionals. These measures will also assist families to access the support which they require.
The availability of improved information, together with the ability to specifically target resources at agreed priority needs, will enable both children and adults with autism to receive the support which they require as they move through the various stages of life. It is in this spirit that the Department of Health and Children looks forward to the many changes – legislative, structural and service related – which will undoubtedly take place over the coming months and years.
I welcome the Minister of State to the House and thank him for a detailed and informative speech.
Staff recruitment and retention is a major difficulty facing the health boards in many areas, including services for people with autism. I spoke here less than two months ago about the recruitment of a senior orthodontist in County Roscommon. While I accept that the Western Health Board advertised this position, there was nobody to take it up. This is a serious problem in rural areas such as Roscommon. I do not know the answer, but it is a problem which must be addressed sooner rather than later. I understand there was funding for the post but, unfortunately, at this stage the health board does not have a senior orthodontist who will deal with children with special needs.
While I acknowledge a lot has been done, much remains to be achieved. I do accept that progress can best be achieved through partnership at national, regional and local level.
According to the Task Force Report on autism of November 2001, "The litmus test for the quality of any society is the way it treats its potentially most vulnerable members." Cutbacks will undermine the aspirations of any Government. The Minister of State may call them adjustments, but they are cutbacks. It is indicative of the way we are failing this group that a number of those vulnerable members of our society and their carers and parents had to make the journey to the gates of the Dáil yesterday in an attempt to have their case heard. We heard them talk of the shortfalls in funding and the cutbacks experienced this year. While we accept progress was made, we hear their representatives talk of reverses and of returning to the position of a number of years ago, rather than making progress. This reversal is not isolated; it is the same story nationwide. In county Roscommon, a particular project in this area had funding of €50,000 for a service in Roscommon town in 2002, but this year there is no funding. We cannot carry on the same service by giving funding one year and then withdrawing it the next.
There is also the situation of a person requiring specialist intensive care. As the Minister of State will be aware, such care is costly and staff intensive, but it has to be done. With the funding being siphoned from other necessary, if not so acute, areas, a person who wants a quality service must pay for it. People no longer accept that those with a disability should just be minded.
In Roscommon there is also no diagnostic team. Early diagnosis is an essential element in the care and treatment of disability. It is a recurring theme in these services that there is great difficulty – if not impossibility – in acquiring the necessary specialists such as speech therapists, psychologists, physiotherapists and occupational therapists. I will refer to the urgent need to improve our training provisions for these later.
There is also a great need to support those who care for people generally and for those who support people with a disability in particular. Parents are entitled to the respite services that will improve their quality of life. This is another of the urgent demands in rural counties such as Roscommon and, I am sure, elsewhere.
Yesterday there was confusion in the Dáil following the Government's lame response trotted out about increases in the last five years, which we have heard again, as if we should stand up and applaud them for disbursing taxpayers' money and doing what was required in this area of great need and distress. On the question of the status of the Disability Bill, there appeared to be widespread confusion, with the Minister of State at the Department of Justice, Equality and Law Reform, Deputy O'Dea, echoing the Taoiseach's uncertainty as to its status and progress on yesterday's evening news. This can hardly bring much solace to those who participated in the awareness exercise outside the House yesterday.
It is difficult for people who have no immediate or personal experience of autism, or of people with disability or special needs, to comprehend the great pressures on those families directly involved. Autism is a rare condition, which is characterised by what is called a triad of impairments: difficulty with developing imagination, difficulty with verbal and non-verbal communication and difficulty with social relationships. It affects about one in 700 newborn children and three out of four people who suffer from autism are male. There are approximately 1,950 children and adults with autism in Ireland. It can be suspected as early as a few weeks or months after birth, or not until the age of two or two and a half. What I find unusual, from a physical view, is that people with autism look perfectly normal and understandably this can often lead to difficulty in diagnosing the condition.
It was in the early 1940s that the first papers identifying autistic children as a group were published by researchers Leo Kanner and Hans Asperger. A great deal of research has been done since then and has focused on the best methods of education and assimilation of children on what is referred to as "the autistic spectrum". This research focuses on early intervention, intensive resources and personnel, intensive emphasis on visual education and realistic training.
The provision of trained personnel and good education facilities is the key to the education of these citizens with autism. There is great difficulty in recruiting the necessary professionals in the vital area of disability support. Why can we not train an adequate number of people for the specialist areas? Although I hear that they are now being trained, why are we discussing this today? There is a great need for an increase in services, particularly for the assessment of children, speech therapy, psychology services, physiotherapy and occupational therapy, although I accept that the Minister of State's figures are bone fide and that there have been increases.
As I outlined, many vacancies exist despite the efforts made to fill the posts. Why are we unable to train the numbers required for our own health services? There are people coming in from South Africa and from various other countries where we are trying to recruit personnel. Why has there been such a shortfall in the recruitment of experienced people? People of the required quality are certainly coming out of second level education and Ireland has for decades exported some of the best health care workers to be met anywhere. This is an amazing problem. From my personal experience, I know of people who are admirably suited and have tried to get training positions but cannot do so for a variety of reasons. A study published in July 2002 dealt with the future shortages and requirements regarding certain health care professionals and how this could be dealt with. I wonder if the recommendation of a major expansion in the training of each of the therapy grades has made any progress.
It is difficult to explain that we appear to be incapable of providing services to those with special needs, to their parents and to the caring professions. This is particularly poignant at a time when we are hosting the Special Olympics. We seem to have failed the people whom we will be celebrating in the next weeks.
In October 2000, Deputy Michael Woods, then Minister for Education, established a task force to investigate all aspects of autism care provision and make recommendations. This report was published in November 2001. The task force was chaired by Dr. Sheelagh Drudy, professor of education in UCD. The committee retained an independent line and made an admirable study of the issues involved, receiving submissions from numerous sources both in Ireland and from outside.
The report was critical of the level of provision for autistic children. It covers a range of issues focusing on the educational needs, which naturally it sees as the benchmark for progress in this area. It also deals in depth with the area of assessment, especially early assessment. It is difficult for us to understand the trauma encountered by many parents as they are shunted from one professional area to another and in some cases almost dismissed. The recommendations in the report are a template for progress and intervention in the care of autism and the supports necessary for the families involved. It recommends that there should be constitutional reform to entitle thousands of special needs children to a proper education.
It is not good enough that a most vulnerable section of our society should have to go through the courts to assert their rights. The work done by Kathryn Sinnott in securing rights for her son, Jamie, has been heroic and has highlighted this area of neglect. Her work has advanced their cause in the face of generations of lack of understanding and neglect for which we are all culpable.
The task force report also focuses on the primary role of the parents as educators of their children as guaranteed by the Constitution. It highlights the sometimes shabby treatment of parents of children with special needs, as when parents were excluded from discussions on their children by professionals dealing with them, as if their input were peripheral. The proper involvement of parents in these issues is essential.
It was the view of Kathryn Synnott that only a constitutional amendment would ultimately guarantee the rights of her son, Jamie, and others. The report seeks "a more solid legal base for legislation in this area" with "education for all regardless of difference". The then Minister promised to set up a new council for special education which would intervene with special needs providers if parents felt they were not getting the services they needed. A disability bill was also being prepared.
Autism is referred to in the task force report as autism spectrum disorder or ASD. The report states that the capacity of current provision and resources has been and is critically unable to meet the needs of all children with ASD in Ireland and that extensive strategic and practical changes are necessary to secure a range of provisions. The creation of a national council for special needs education and the devolution of administration to regional special needs organisations are recommended.
In 1996, the Commission on the Status of People with Disabilities emphasised that special education is a service, not a place, and that parents should be fully involved in any education intervention. A good outcome is generally defined in terms of reaching full potential and an appropriate level of independence and social competence through acceptance within society. Appropriate educational intervention is seen as the major positive response and not hospital placement, as in times past.
Some legislation is very relevant to people with disability, in particular legislation dealing with health and education. The Education Act 1998 and the Freedom of Information Act 1997 are important. The Freedom of Information Act has been curtailed by this Government, which means that necessary information may not be available and the critical area of disability may be impinged upon. While I could not accuse anyone of being so heartless as not to wish to cement the progress which is undoubtedly being made, there is a lot more to do to enable us as a society to pass the litmus test of treating our most vulnerable members in a caring and valuable way. I agree with the Minister of State that it is a difficult brief but more funding is required and cutbacks will not help his case.
I welcome the Minister of State to the House. He said in his concluding remarks that while many advances have been made in recent years, much remains to be achieved. Much has been achieved but equally, much remains to be done. When we speak about people with autism we are talking about the most vulnerable people in society. It behoves us all, especially those of us who are elected representatives, to use that position to best effect to ensure the provision of the optimum services for those people.
I agree with Senator Feighan's point regarding the training of appropriate professional staff. There has been a difficulty in recruiting such staff. Career guidance teachers can play a pivotal role in this regard by encouraging young people to pursue such occupations. That might alleviate the situation somewhat. There is a shortage of professional staff in the medical, nursing and paramedical areas.
The provision of orthodontic services has been difficult. I am pleased to inform the House that in the case of my health board, the corner has been turned. I am sure Senator Bannon will agree with me when I record our appreciation of the contribution of Dr. David Hegarty.
Between 1997 and 2002, approximately 1,700 additional residential places, mainly community-based, have been provided. This figure includes new residential respite places developed between 1997 and 1998. Between 1999 and 2002, approximately 465 residential places were provided. Children with autism require special care and they demand additional attention. In families with other children, respite care helps relieve stress and it is imperative that appropriate respite care is provided for families with an autistic member.
Between 1997 and 2002, additional revenue and funding, amounting to just under €327 million – revenue of €188 million and capital of €139 million – was provided for the maintenance and development of services for persons with an intellectual disability and those with autism. The national intellectual disability database indicated that in 1996, 85.5% of those with an intellectual disability, or 22,804 persons, were known to be in receipt of services. This figure had increased to 89.8%, or 24,035 persons, by 2000. We do not plan to slip a disc by slapping ourselves on the back. While we have made great strides, much needs to be done, as the Minister of State has said.
The Midland Health Board, of which I am a member, allocated over €2 million between 2000 and 2003 towards the development of services for persons with autism residing in its catchment area. A total of 14.5 posts have been approved and funded for a regional multidisciplinary specialist team. A regional respite care facility at Charleville Cottage, Tullamore and a regional community based residential and day facility based in County Longford, in Senator Bannon's locality, were commissioned in 2002. These facilities are partnership initiatives between the Midland Health Board and Rehab. The health board has two consultant psychiatrists – one for children and one for adults – with a special interest in intellectual disability and autism. The board provides a range of community and home support services for families of children with autism. Additional funding of €290,000 was provided for these services in 2003. A sum of €240,000 was allocated towards the regional respite facility in Tullamore and €50,000 was provided for a therapist for the regional multidisciplinary team.
In the context of planning services for persons with autism and in the absence of reliable studies of the prevalence of autism in Ireland, the Midland Health Board commissioned the National Research Agency to undertake a review of current service provision in the health board area. This exercise will inform the future development of services. The number of children in the health board area with autistic spectrum disorder ranges between 139 and 144, between 75 and 82 of whom have also been diagnosed with an intellectual disability. The study also identified 126 adults with autistic spectrum disorder. It would be remiss of us, at this point, not to highlight the great work being done by parents, friends of the mentally handicapped and the many groups working in this area.
Approximately €14.6 million has been allocated since 1998 to enhance the early intervention, pre-school and multidisciplinary support services for children with an intellectual disability and those with autism. It is regrettable that such persons were treated in psychiatric hospitals. I am pleased that their reallocation to appropriate settings and locations is continuing. If one person with autism is left in a psychiatric hospital, it is one too many. As somebody who worked in such services for many years, I regret to say the setting was most inappropriate to the needs of such persons. It is a monument of shame to successive Governments that this was allowed to happen.
Additional funding of €11.43 million was provided for health boards between 1999 and 2002 to enable them to put in place a range of support services for persons with an intellectual disability or autism who present with major behavioural problems and require a more intensive level of support. This is an important provision, as it has helped to advance the care of such persons. We have to admit that more needs to be done, however.
A programme has been put in place to transfer persons with an intellectual disability or autism from psychiatric hospitals or other inappropriate settings. This programme provides alternative placements and/or an enhanced level of services for such persons. The number accommodated in psychiatric hospitals in October 2002 was 452, a decrease from 970 in 1996 and 503 in December 2001. The new accommodation provided has included community based homes and a number of residential and day complexes. Senator Bannon and I, who are members of a health board, always take the opportunity to point out that it is imperative that health boards continue to provide community based services for such persons. I thank the Senator for his support.
The national monitoring committee, which includes representatives of the Department of Health and Children, the Health Research Board, the chief executives of the health boards, the National Federation of Voluntary Bodies Providing Services to People with Intellectual Disability, the National Parents and Siblings Alliance and the National Association for the Mentally Handicapped of Ireland, is also involved in the monitoring of the development of services for persons with autism. It is important that we continue to strive to provide services for those not in a position to provide services for themselves. As colleagues on the other side of the House have said, the great crusades of people like Kathryn Sinnott should be applauded. Ms Sinnott and others have fought ongoing cases over many years to ensure their children can get a break in life. Many people, some of whom are members of large families, have been discarded in the corner of houses for many years. Cases like that of Christopher Nolan, with whose father I served as a staff nurse at St. Loman's Hospital, have proved that such people can have a very high level of intelligence. If the belated interest in this subject, which has manifested itself in this and other debates, contributes to better services for persons with autism, so be it.
I thank the Leader for providing an hour and a half for this debate, in response to a request I made to her. I thank the Minister of State, Deputy Tim O'Malley, for coming to the House to give us a comprehensive reply to some of the statements that have been made. I do not believe his speech was adequate, however, as it read like many of the presentations made to the Joint Committee on Health and Children some time ago. The presentations were defensive, somewhat self-congratulatory and did not hold out any particular hopes or projections for the future. It should be acknowledged that successive Governments have done a great deal for people with special needs but this debate is about autism. I had hoped the Minister of State's contribution would provide a great deal of information about the numbers of autistic children and adults, the projections the Department feels are appropriate for the future, costs and the measures that could or should be taken. Such details were singularly lacking in his statement. I admit that such information is difficult, if not impossible, to gather but it would be helpful if some realistic estimates could be obtained.
When one is dealing with autism, one encounters problems such as a denial of its existence, a lack of acknowledgement of the problems involved and faulty diagnosis. I suspect that the fact that the numbers diagnosed with autism are increasing all the time can be attributed to increases in the accuracy of the systems of diagnosis. It is only now that we are beginning to discover the large extent of this problem. Many children and adults with autism were not aware of it for a very long time.
The Minister of State's reply, while it points us in the direction of past realisation of this problem, is very much a departmental brief. The words, "my Department" appear in it so often that one becomes suspicious that it is not written by a Minister. It is also somewhat defensive. What I would have liked to hear would have been something more hopeful for the future but we did not get that.
Any suggestion that the resources are not there is unacceptable so long as the Government – this is a political point – the Members of this House and the public service are paid such vast sums of money in unjustifiable increases. It is simply unacceptable, when benchmarking is accepted by all parties that the same parties say money is not available for children with problems of this sort. It is the unacceptable face of a Government giving money to itself, its Ministers and Members of this House when other people are suffering in a way which could be relieved by those same people. That is something which we have to face. Moral issues are still there in our society and it behoves Ministers to face and be challenged by these particular types of moral issues. It is unacceptable for people who are well paid to say that the resources are not available when they are benefiting from those same resources.
Nobody could have sat on the committee which I attended, as did Senator Henry, without being impressed by Kathy Sinnott. It is very different for us to discuss it in the abstract and to talk about statistics and the magnificent job which the Government and the universities have done in providing more therapists, more undergraduates, more degrees, more qualifications. It does not read like that on the ground. One only has to talk to people who have autistic children. They do not say things are getting better. They say that, if anything, things are getting worse, that there is a complete lack of acknowledgement by the authorities of the real problems which parents and children have to face – but particularly parents, because they realise what is going on. They may have politicians and all sorts of organisations and Departments coming back to them, but the situation for them on the ground is not a great deal better than it was.
I gather, based on anecdotal evidence, that the problem is first manifest in very young children. In spite of that, it takes weeks, months and even years for the parent of a child who is suspected of being autistic even to get an appointment. That is the reality. One can create any number of graduates and pay the Government all this money, but it is useless if one cannot produce people to assess autistic or potentially autistic children. This increases the anxiety for parents. That is the first resort and the problem has, apparently, not been resolved.
It is no good saying that these things are being resolved in structural ways. It is just not happening on the ground for the people concerned. In California they say that if you catch children before they are three, there is a very good chance of what they call normalising them in later life. I am aware that there is a very limited amount of research being done into this area. By not catching them before they are three, which as far as I can gather is the norm here, one is actually prejudicing their chances. It is no good making excuses and saying the Department is doing this, that and the other, when we could do something about that.
The other matter which Kathy Sinnott raised at that meeting was the important one of the roles of the Department of Health and Children and the Department of Education and Science. I do not think it is a turf war between the Departments but there seems to be a great deal of conflict about whether this is an educational or medical problem. In the treatment available here, there seems to be a huge emphasis on its being purely an educational problem. There appears to be the belief that if one produces enough educational therapists this problem will be resolved.
I gather that the Minister for Health and Children made a promise in Cork more than three years ago that a national hospital centre would be set up there. I would like the Minister of State to respond to this. I am not making a political point. I would genuinely like to hear the reason nothing has happened. It is apparently because the finances are not there. I do not believe that this is a good enough reason. This problem deserves both a medical and educational response for the children.
As Senator Feighan so rightly said, the parents also need respite leisure time and relief from this extraordinarily acute problem. I am sorry that I do not have sufficient time to go into this matter in more detail. I would like the Minister of State, in his response, to give us a target outlining what he intends to do in the immediate future and what prospects there are for change in concrete terms.
I thank Senator Ross for sharing his time with me. I also thank him for initiating this debate and for explaining so clearly the practical problems that the parents of the children we are discussing are having.
Like Senator Ross, I too am rather disappointed by the statements of the Minister of State, Deputy Tim O'Malley. His statement focused on staffing, which is all very well, but as Senator Ross mentioned, we really do not appear to know the numbers of children who are suffering from autistic spectrum disorder – which is probably a better way of describing them than autistic children. Autism is not a pure diagnosis and it is a feature of many children who have mental disabilities.
It is extremely important that we become involved in research as to the cause of the condition. We are not sure of the cause but it is quite possibly a genetic disorder of brain chemistry. What we do know is that there are about four boys to one girl affected and that it comes on at the time of cognitive development at about 18 months to two years. This is just when a child is beginning to flower and develop and it is extraordinarily distressing for parents who, as Senator Ross so rightly said, then cannot get anyone to see and assess their children.
I wish to draw the Minister of State's attention to an article written in a recent copy of the British Medical Journal regarding the association in the minds of the public between the administration of MMR, the measles, mumps and rubella vaccine, and the development of autistic spectrum disorder. The authors of this report interviewed members of the public as to how they felt the medical profession perceived the association between MMR and the development of autism. The general public felt that it was split about 50:50; that about 50% of the medical profession supported the notion and the other 50% did not. This, as the Minister of State knows, is not the case at all. Very few people see that there is any association between the administration of MMR and the development of autism. It is just unfortunate that these things happen around the same time and, naturally, all of us like to find a cause for what has happened to our child. British, French, and Finnish studies have shown no association at all between them.
I remind the House that the administration of MMR is still compulsory in the United States of America before a child is allowed enter school. It is most important that we try to do something about the falling rates of MMR vaccination in this country. The public health doctors' strike is making matters even worse. We need to come forward with proper research into the issue because we will end up with children with mental disabilities due to their being unvaccinated. Unvaccinated girls who contract rubella, German measles, when pregnant may produce mentally and physically disabled children. If they contract measles when pregnant they can get encephalopathies later in life. I urge the Minister of State to bring research on autism to the top of his agenda in order that we can make a contribution to this issue on the world stage.
I am glad of the opportunity to say a few words on this issue and congratulate Senator Ross for having raised it. Like my colleagues, I have been contacted during the years by a number of people in connection with autism. Some time ago a man from Sligo wrote to all Members of the Oireachtas but received very little by way of response. He sought a meeting with the Minister but did not get one. As I was abroad at the time, there was a delay in replying and I received a pretty snotty letter pointing out that I had not replied. As I can see some of my colleagues nodding, they must have received the same letter. I understand the man's exasperation.
A few years ago I raised on the Adjournment the case of a very caring family who had an autistic child and another child with problems. The autistic child was doing well with speech therapy which was withdrawn because of some relocation of resources within the health board area. As a result, the child started going backwards, which is the most awful thing about autism. When such services are withdrawn, the child starts to regress. For that reason I welcome what the Minister of State has said.
There are positive figures which I presume one can believe. It is splendid to have an increase in the number of speech therapists and those working in remedial linguistics from 100 to 2,000 but I want to know how many such children there are. That is the way we should work out the equation. Instead of saying we have this rate of increase, impressive as it is, we should accurately assess how many such children there are and then work out how many speech therapists are required to service them. Those figures are not contained in the Minister of State's speech, although that is the way we need to approach the matter.
I was impressed when Senator Ross first raised this issue on the Order of Business, having attended a committee meeting which obviously moved him. As the Senator said, each case within the autistic spectrum disorder is quite different. That is the very challenging aspect of the disease. It is not like treating measles because each autistic person has a characteristically different syndrome. That means there must be the most intense, personal, one-to-one relationship between the person who is helping and the autistic child. This, in turn, requires a considerable amount of resources. The treatment of autism is expensive but if we, as a society, say we care, we will have to accept the cost involved.
Like other speakers, I welcome the Minister of State, Deputy Tim O'Malley. In doing so, I also commend Senator Ross for his persistence in seeking this debate, which is very worthwhile and possibly one of the most interesting we have had for some time. I am a mother of four, perfectly normal, beautiful children. Some 18 years ago, when my eldest child started attending national school, to my shame I had never heard about autism and did not know what it meant. I was a young mother in my 20s with four children under five and was too busy learning about Sudo Creme and nappy rash. It was not until one little boy in my son's class left after a year that I learned something about autism. When I asked his mother the reason, she told me her child was autistic. She said autism was a child development problem, a social communication disorder. It took me months to take this in but the child had left the national school to attend a special needs school. My view was that autism was a very severe, lonely and isolating disorder. More often than not, however, it is accompanied by a physical or learning disability. It marks the beginning of a long and difficult road for children as regards their future education.
We are all now familiar with that look one gets from a autistic child. They look perfectly normal, just like other children on the road or in the playground, but they do not speak when it is their turn to do so and cannot interpret the tone of somebody's voice to understand whether it is an order to do something or a caring phrase. More often, possibly always, autistic children are locked into a world of their own. As with the look of an autistic child, we are all familiar with their behaviour, including hand clapping and swinging around.
What happens to these children? I am glad to say an awful lot more is happening for them now than when I first encountered the condition of autism. In the last 20 years major advances have been made in this area. With a recognition of autism we also see support systems in place. Having listened to Senator Ross, I can see that what is happening in the North Western Health Board area is not replicated in every other region. The North Western Health Board covers counties Donegal, Sligo and Leitrim. When I was researching this subject, I was told about the wonderful service people are receiving in County Donegal, which is second to none. It is unique because I have heard nobody else mention this in today's debate. It recognises the need for support and resources at pre-school age. A child must be diagnosed between two and two and a half years of age. The health board is doing so and providing support in people's homes in the form of applied behavioural therapy.
My fellow Senators will be pleased to hear that 75 children are receiving such support. The impact of this one-to-one therapy by trained professionals is immense. These professionals come from a social therapy background or specialised nurses' training in learning disabilities. The one-to-one therapy has been hugely significant as well as rewarding for the autistic child and his or her family. Those receiving this treatment in County Donegal are classifying it as best practice and best service. How lovely it would be to see it being continued in the rest of the State.
This type of service does not work on dedication alone, however. Whether it involves the dedication of staff or parents looking after the child, it does come at an enormous cost, as Senator Ross has pointed out. The annual cost of providing the service in County Donegal is estimated at €1 million. This is where I want the Minister of State to lend me an ear because this cost has to come out of our health board's budget. While County Donegal has an excellent service, counties Sligo and Leitrim cannot avail of it to the same degree. We are looking to the Minister of State to try to increase the budget, although I realise that is not too friendly a term to use at present. I implore him to try to increase the relevant financial benefits for those who do not have a voice of their own.
I was glad to hear the Minister of State refer to better communications on a more structured basis between his Department and the Department of Education and Science. He said there would be better interdepartmental consultations. Up to now, however, a formal relationship between both Departments has been lacking. Where there is such a good relationship between Departments, great results can be obtained, as we have seen at local level. The Joint Committee on Health and Children, of which I am a member, had a meeting with our opposite numbers in the Joint Committee on Education and Science recently.
While the number of speech therapists has increased across all health board areas, there is still an overall lack of such staff, as I know from talking to those involved in the profession as well as those who sit on health boards. The Minister of State alluded to the fact that such health workers were being actively recruited. However, while we have gone as far afield as New Zealand and Australia seeking speech therapists – because they must come from English-speaking countries – I am told that very few have been recruited abroad. Why is that so? Are we paying enough to our speech therapists who undergo an extensive four year training course? Are we offering them lucrative contracts to work within the health board system? The Minister of State should examine these matters. I acknowledge that huge inroads have been made into the problem for which I commend the Minister of State and his departmental officials.
May I interrupt the Senator? I understand that, in accordance with the business ordered for today, the Minister of State should be called upon to reply to the debate now. I also understand, however, that there will be an amendment to the Order of Business to give Senator Feeney an opportunity to continue.
The Minister of State referred to the extra places created last year, including three new schools in Galway, Cork and Limerick, giving a total of 75 places, for which I commend him. However, there is a great need in this area because the language component in autism is one of the basic needs. Treatment has improved, but parents' expectations are higher than they were 20 years ago and rightly so. There is no one in this House who would not seek better value for money. We are all singing from the same hymn sheet when it comes to getting better value for money. When one considers how Departments work at local level, whether in education or health, if this is achieved at regional and national level we will get better value for money. Having everyone work together is what will give the best results. We have seen multidisciplinary teams working in other areas. This is an area in which we can be most effective.
The Minister of State offered a major commitment in his contribution. This was obvious in the way he outlined the number of people currently in postgraduate training. I hope these individuals will go on to form part of the multidisciplinary teams needed in that area. I was touched to hear that he will be putting structures in place and that he will not be adding to the burden of mothers or fathers with autistic children.
A good friend of mine – we are the same age – left it until late in life to have her family. She has only one child and is a single parent. Just two months ago her little boy was diagnosed with Asperger's syndrome. I know the devastation it has brought to her life. She is a very successful business woman, but her whole world has fallen apart. She takes the train to Belfast twice a week in order to educate herself on how best to treat her child. She is trying to get him into a school here, but there are huge waiting lists. There are 28 children on the list ahead of her child. We need more resources and I call on the Minister of State to try to put more funding into this area.
I welcome the Minister of State. I am disappointed that his contribution lacked some sensitivity towards parents and other family members affected by autism. It would not take Einstein to work out that the money spent by the Government defending legal actions taken by parents seeking appropriate facilities and education for their autistic children would be better spent on providing these basic rights. However, it would apparently take someone more qualified than Einstein to persuade the Government that this is the case.
I remind Senator Glynn that, in the Midland Health Board region, 24 parents are taking actions in the High Court. Early childhood services and special education are essential for children with autism, otherwise their condition will deteriorate. That any Government could force parents to have recourse to legal action and then fight that action, despite funding shortages and cutbacks in all health board regions, is beyond belief.
It is well established that the secret of success in respect of autism is early and extensive intervention. If the proper facilities and therapies are put in place, almost 50% of three to four year olds who present with ASD are able to join mainstream education by the age of ten. The previous speaker referred to this matter. In America, the current incidence of autism spectrum disorders is one in 129. Unfortunately, Ireland, where the incidence is much higher at one in 86, is different. Even though the need is greater, many essential services and facilities are either non-existent or substandard. In the Midland Health Board area, some progress has been made in the provision of services for those with autism. Drastic Government cutbacks, however, which are common in all areas throughout the country, are causing these services to be curtailed and, in some cases, cancelled or disbanded.
There is very little integration between the Departments of Health and Children and Education and Science in the Midland Health Board region and I am sure this is common elsewhere. Consequently, a completed service plan for each individual cannot be developed and the most efficient utilisation of the resources, such as they are, cannot be made.
During a recent six month period, out of 34 families requiring services for autistic children, 15 received no speech and language therapy, 26 received no occupational therapy, 28 received no play therapy, 13 did not see the relevant doctor and 29 received no psychological service. Special classes for autism use the outdated model, Treatment and Education of Autistic and Communication-Handicapped Children. Regrettably, this is being provided in some cases by individuals who are neither qualified teachers nor trained to deal with special needs children. There are no pre-school facilities for intense intervention. There is a non-integrated class at the Presentation senior school in Mullingar, with a 6:1 pupil-teacher ratio, but the teacher is not fully qualified in this area. Despite several children now coming under the NEPS scheme, which requires one-to-one primary education, there is no attempt by the State to deliver such a service in the midlands. Post-18 years facilities for autistic adults are non-existent. Appropriate adult placements must be provided, including residential care where necessary, but not in psychiatric hospitals.
Huge burdens are placed on families of autistic people in terms of finance, time, stress, strained relationships between parents and among siblings and a lessened quality of life for all members of the immediate family. Life for many such families is a struggle without end and without hope. Due to their lack of communication skills and inability to understand the world around them, people who suffer from autism spectrum disorder have a real fear of that world. Failure to help them to acquire the skills to enjoy life and to interact with other human beings is tantamount to torture.
There are currently seven schools for children with autism throughout the country. The 90 pupils in these schools face an uncertain future as the Minister has only guaranteed funding until September 2004. Three schools run on the CABAS method have been set up by parents and are funded by the Department of Education and Science as pilot projects for five years. They are located in Dublin, Drogheda and Cork and their success has brought about a huge demand for similar schools. However, the future of these schools is uncertain because of the shortage of funding in this area.
The rights of autistic individuals are enshrined in the Constitution, the Education Acts, the United Nations mental health directives and the European Charter of Rights for Autistic People. These rights must and should be met. I ask the Minister of State to consider the rights enshrined in the various articles and ensure that they are upheld.