Seanad debates

Wednesday, 21 January 2004

3:00 pm

Tim O'Malley (Minister of State, Department of Health and Children; Limerick East, Progressive Democrats)
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I thank Senators for inviting me to speak on the National Disability Authority's recently published report, Review of Access to Mental Health Services for People with Intellectual Disabilities. I am pleased to have the opportunity to outline what the Government is doing to meet these and other needs which have been identified for people with intellectual disability.

Ireland in recent years has enjoyed increased investment in its health and social care economy, helping it to modernise services, raise standards and extend provision to more citizens in need. Additional funding amounting to €643 million has been invested in health funded support services for people with disabilities since 1997. This includes an additional €25 million in current expenditure which was made available by the Minister for Finance in the 2004 budget for services for people with disabilities.

Additional revenue and capital funding of €370 million has been provided for intellectual disability and autism services since 1997. This has provided approximately 1,700 additional residential places which are mainly based in the community. This figure also includes new residential respite places developed in 1997 and 1998. Between 1999 and 2002, approximately 465 extra dedicated respite places have been provided. In addition, 2,950 new day places were developed.

We have also funded alternative placements and an enhanced level of services for persons with an intellectual disability or autism who were resident in psychiatric hospitals or other inappropriate placements. The number of persons accommodated in psychiatric hospitals in May 2003 was 438. This is down from 571 in 2001 and from 970 in 1996. Huge progress has been made in this area and there has already been a large reduction since 2003. The new accommodation provided has included community based homes and a number of residential and day complexes.

Since 1998, approximately €16 million has been put into the system to enhance early intervention, pre-school and multi-disciplinary support services for children with an intellectual disability and those with autism. Between 1999 and 2002, the Department provided additional funding of €11.43 million to enable health boards to put in place a range of support services for persons with an intellectual disability or autism who present with major behavioural problems and therefore require a more intensive level of support.

Key developments noted in the 2002 report of the national intellectual disability database reflect this investment. There has been a 37% growth in the number of people with intellectual disability living in full-time residential placements within local communities and a 165% increase in the provision of intensive placements designed to meet the needs of individuals with challenging behaviours. This includes individuals whose behaviour may arise as a result of a dual diagnosis of intellectual disability and mental illness. There has been a 47% reduction in the number of people accommodated in psychiatric hospitals and a continued expansion in the availability of residential support services, in particular, service-based respite services, which have grown by 255%, with an additional 443 people reported as being in receipt of these services between 2001 and 2002. There has also been increased provision in almost all areas of adult day services and in the level of other support services delivered as part of a package of day services to both children and adults.

In the period 1999-2003, additional revenue funding of €78.3 million was provided for ongoing developments in mental health services, to develop and expand community mental health services, to increase child and adolescent services, to expand the old age psychiatry services, to provide liaison psychiatry services in general hospitals and to enhance the support provided to voluntary agencies. Approximately €190 million in capital is being provided over the lifetime of the national development plan to fund the development of acute psychiatric units linked to general hospitals, as a replacement for services previously provided in psychiatric hospitals. Substantial progress has already been made and 21 general hospital psychiatric units are now operational. It is expected that a further unit will become available to the mental health services in the near future.

Substantial progress has been made in recent years in ensuring that those in need of mental health services receive care and treatment in the most appropriate setting. Health boards have developed, and are continuing to develop, a modern comprehensive community-based mental health service. This has resulted in a continuing decline in the number of in-patients, with a corresponding increase in the provision of a range of care facilities based in the community to complement in-patient services. It is intended to continue to accelerate the growth in alternatives to hospitalisation with the further development of community based services throughout the country. There are approximately 400 community psychiatric residences in the country, providing more than 3,000 places. This compares to 111 residences, providing less than 1,000 places, in 1984. Approximately 200 day hospitals-day centres provide more than 3,500 places. This compares with 39 such centres, providing approximately 1,200 places, in 1984.

The new Mental Health Commission, established in April 2002 under the provisions of the Mental Health Act 2001, has an important role to play in improving the quality of our mental health services. The primary functions of the commission are to promote and foster high standards and good practices in the delivery of mental health services and to ensure that the interests of detained persons are protected. The Mental Health Commission is now working, along with officials from my Department, to put in place the structures required for its new role. The commission has appointed an inspector of mental health services and the inspector will be required to visit and inspect all approved centres at least once a year. The inspector's annual report and review of the mental health services will be published and laid before the Houses of the Oireachtas along with the commission's annual report.

There are, however, a significant number of people whose needs intersect both services, those with a dual diagnosis of intellectual disability and psychiatric illness and-or challenging behaviour. The NDA report states that published evidence suggests that approximately 8,000 people with an intellectual disability in the State also have a psychiatric condition. Some 4,500 of these may require some type of specialist assessment and treatment.

The NDA report states that persons registered with a generic intellectual disability service provider find it difficult to gain access to appropriate mental health services for assessment, treatment or continuing care. In some areas, local informal arrangements exist to provide emergency assessments and treatment, but a defined service appropriate to the needs of the dual diagnosis group does not exist nationally at present. The report of the review group on mental handicap services, Needs and Abilities, which was published in 1991, recommended that people with a mild intellectual disability should not be referred to the specialist intellectual disability services, but should access generic services, including generic mental health services. The NDA report has also outlined some of the reasons this approach is not working for people with a mild intellectual disability as regards accessing mental health services.

My Department has been concerned about this issue and has endeavoured over a number of years to encourage and assist health boards to put in place arrangements to improve access to services for this group. Two specific initiatives now present my Department with an opportunity to progress this matter. The first is the national policy framework for mental health services. The health strategy, Quality and Fairness — A Health System for You, includes a commitment to prepare a new national policy framework for the further modernisation of mental health services, updating the 1984 policy document, Planning for the Future, and taking account of significant initiatives and policy developments which have occurred in the interim. An expert group on mental health policy was established in 2003 to prepare this national policy framework. It is envisaged that the expert group will examine, among other issues, access to psychiatric care. Last year the group requested submissions from interested organisations, individuals and the public on the issues concerned and more than 140 submissions have been received. Each submission received will be carefully read and considered by members of the expert group and will feed into the group's deliberations over the next few months. It is expected that the expert group will complete its work in 18 months.

In accordance with a commitment in Sustaining Progress, the social partnership agreement for 2003 to 2005, my Department is required to carry out a strategic review of existing service provision, in consultation with relevant interests, with a view to enhancing health and personal social services to meet the needs of people with intellectual, physical and sensory disabilities and autism. This review is particularly timely for the following reasons: the period of time which has elapsed since the publication of the relevant policy documents in this area; Government policy in relation to mainstreaming services for people with disabilities; the level of additional funding invested in the services in recent years; the publication in 2000 of the health strategy, Quality and Fairness — A Health System for You, and the primary health care strategy; the health services reform programme approved by Government and published in June 2003 and the new legislative measures being introduced in the area of disability.

This review will examine a number of specific areas of service provision, including access to mental health services for people with intellectual disability and those with autism. The strategic review has a similar timeframe to the expert group on mental health services and both groups will take into account the recommendations contained in the report published by the National Disability Authority in terms of their respective services.

Substantial progress has been made in recent years in ensuring that those in need of mental health or disability support services receive care and treatment in the most appropriate setting. However, much remains to be done. I am committed to the provision of quality care in both areas and I will continue to endeavour to secure additional funding for these sectors in the coming years. The active participation of all involved will assist in progressing what is ultimately most important, namely, the delivery of quality and cost effective services to people with a dual diagnosis.

I congratulate the National Disability Authority on the publication of a timely and informative report. This is one of a number of reports published recently by the NDA. The other two cover the areas of service provision for people with disabilities and further education, training and employment services. I assure those who gave of their time and expertise to enable these reports to be published that they will be of great assistance to the service reviews which are currently underway. I also encourage them to take any opportunities which may arise over the coming months to make further contributions to this process. The active participation of all involved will assist in progressing what is ultimately most important, namely, the delivery of quality and cost effective services to people with a dual diagnosis. It will also guide the planning, development and delivery of mental health and disability support services over the coming years.

4:00 pm

Photo of Frank FeighanFrank Feighan (Fine Gael)
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I welcome the Minister of State to the House. I also welcome the opportunity to debate this important report on a neglected area of our health and disability services. Like the Minister, I congratulate the National Disability Authority on taking the initiative in this area and on the production of a report which makes depressing reading for those of us in public life who have a role to play in the development of public policy and services.

The availability and appropriateness of mental health services has long been a neglected area. One must read the many hard hitting reports of the inspector of mental hospitals in recent years and the appeals made by mental health patient advocacy groups to understand the severe gaps in services throughout the country. This report highlights the enormity of the problem facing a group of people, namely, those with an intellectual disability, who may have experienced inadequate and inappropriate services for many years. According to the national intellectual disability database, 515 people with intellectual disabilities are resident in psychiatric hospitals. Many of those people are inappropriately placed in full-time psychiatric care. However, there are shortfalls in the services for people who may genuinely require psychiatric and mental health services. Almost 34% of people with an intellectual disability also have a psychiatric condition and more than half of them may require assessment and treatment.

The report was published during the European Year of People with Disabilities when Ireland had the honour of hosting the Special Olympics. On the eve of the publication of the long promised and eagerly awaited Disability Bill, any feel good factor which was generated during the Special Olympics last summer has been diminished by this report. As a society, we are moving away from the paternalistic model of disability and are moving slowly towards a recognition of the human rights of individuals with a disability. The parents, families and advocates of people with intellectual disabilities have driven much of this progress. The approach lays increasing emphasis on the participation of persons with a disability and their representatives in the formulation and implementation of plans and policies affecting them. The current mental health service provision is grossly inadequate. The review underlines the very stark and unpalatable fact that there is incoherence in the strategy of the Department of Health and Children. Meanwhile, in my area, a group of parents of children with disabilities have for many years sought reasonable dental care for their children, to no avail. Several of my Oireachtas colleagues have asked about this in the Dáil. I raised it on the Adjournment here last year and the Minister of State responded, as did the Minister, Deputy Martin, when it was raised with him. The response of each Minister is to pass the responsibility on to the CEO of the Western Health Board yielding no improvement.

When will people take responsibility? As the group finds it nigh impossible to resolve this issue, which requires limited resources, what hope is there for initiation of the broad framework service envisaged in this report? These difficulties should be resolved here but once again they are passed down through the bureaucracy. There has been no intervention in this area and I ask the Minister of State to intervene as soon as possible.

People with intellectual disabilities do not enjoy the same right to a range of mental health services as the general population, and community services are virtually non-existent. There is no clear route to support during acute psychiatric episodes for people with intellectual disabilities. While many reports have been published and many policies espoused, there has been little progress due to the lack of leadership at a political and policy implementation level. There are in the State only six psychiatric hospital beds dedicated to the in-patient care of people with intellectual disability who suffer from a mental illness and who are under the remit of the Inspector of Mental Hospitals. Far too few psychiatrists specialise in intellectual disability for adults and children. We cannot in conscience allow this to continue.

I agree with the NDA conclusion that we must act now to protect and promote the rights of all citizens with mental health problems, in particular, a comprehensive mental health service for people with intellectual disabilities must be provided urgently. To allow the current inappropriate and inadequate situation to continue is a denial of human rights. There is a pressing need for provision of primary services and the development of new services with a legislative base and a right to access and standard service must apply. At a departmental level, political and policy leadership is required to promote a national policy statement and service framework for mental health services for the dual diagnosis group. There must be consistency of services throughout the country. Geography must never be used as a barrier to service access as unfortunately is happening in my area. The realignment of the health services promised under the health strategy and the other recent major health reports must take account of these needs. Where possible, services should be provided in the community which will facilitate intervention by multidisciplinary teams during every stage of assessment, diagnosis and treatment.

There are 50 recommendations in this report covering all action areas. They must be examined, prioritised, funded and acted upon because this report is a wake-up call. There can be no further delay. The provision of appropriate services to people with a disability has been inadequate for too long. Despite investment over the past decade, progress is painfully slow. Like the Minister of State, I look forward to the publication and enactment of a comprehensive rights-based disabilities Bill as promised by the Government for this month. Some progress has been made but much remains to be done.

We celebrated wholeheartedly the Special Olympics as a showcase of excellence, ability and extraordinary talent, and I pay tribute to many of the organisers and those involved over the years, particularly last year. It was refreshing and reassuring to see that spirit of giving. Now that the games are over, we must all work together to build a truly inclusive and equal society where everyone, including and especially those with disabilities, is empowered and enabled to contribute to her or his full potential. It is a difficult area and I wish the Minister of State well. I will support him in any initiative that will help ease these problems.

Photo of Camillus GlynnCamillus Glynn (Fianna Fail)
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Ba mhaith liom fáilte a chur roimh an Aire Stáit agus tréaslú leis as ucht na sár-oibre atá déanta aige dóibh siúd atá faoi mhíchumais intleachta. É sin ráite, tá níos mó le déanamh fós. Mar a deir an seanfhocal, "Tús maith leath na hoibre". Since assuming his present role, the Minister of State has been a hands-on Minister and has achieved a great deal but even he must acknowledge there is much more to be done and we all recognise that. I welcome this timely report which affords us an opportunity to review what has been achieved and assess what more needs to be done. I cannot agree with Senator Feighan's statement that progress has been painfully slow. It has not. I am a former psychiatric nurse and in the 1970s a colleague and I carried out an assessment using case notes to establish how many people with an intellectual disability had been admitted to a hospital in the midlands. Arising from that, the Lough Sheever centre was established and at least three wards were occupied by people with an intellectual disability. They received all the services that pertained at the time to their requirements. A similar development occurred at St. Fintan's hospital in Portlaoise when Alvernia House was set up.

Hearing the statistics read by the Minister of State, we all accept that 438 people in psychiatric hospitals as of May 2003 is 438 too many. However that number is down from 571 in 2001 and 970 in 1996. Can anyone imagine the numbers in the mid-1970s? Great strides have been made since then. Nevertheless, we need to do more. Only six beds are provided in Stewart's Hospital for the specialised treatment of people suffering a psychiatric illness and an intellectual disability. That is the only control which the Inspector of Mental Hospitals holds over those people. During the reigns of successive Governments the inspector has made adverse comments about the psychiatric services with many of which I agree. Much of the publicity around these comments is unfair because the local media give the impression that the medical, nursing and other staff are to blame for the conditions which they are not. We want to place that on the record.

I had a very pleasant experience yesterday. I was served in a shop in my local hospital by a girl with an intellectual disability. I was so pleased, because she went to school with my daughter. I placed my order, the girl charged me the appropriate amount and I got my correct change. There is no big deal about that as it is what I expected. This girl is not the only intellectually disabled person employed by the Midland Health Board or indeed by other boards.

While accepting that we have achieved much, there is more to be done. Page 64 of the report refers to "community area mental health/intellectual disability teams". I strongly favour the model proposed by the Irish College of Psychiatrists and I feel sure the Minister of State favours it too. In supplying mental health services to people with intellectual disability, the proposal is that the team should ideally comprise two consultant psychiatrists, four psychologists, four psychiatric nurses, four social workers, four registrars, two occupational therapists, one speech and language therapist and four administrative officers. The registered disability nurses for the intellectually disabled should be incorporated in that team, because we are speaking of an appropriate nursing discipline which should be used.

Reference has also been made in the report to secure units in the community, and this report is valuable because it highlights what is positive and negative about them. The report notes how skilled the staff have become in dealing with people in residential care in these units. That is fine, but it is clinically proven that there can be a downside for the clients.

To ensure progress, we must devolve additional resources and provide appropriately trained people. I served on a health board for many years and had the honour of being chairman for two years, up to last July. We currently have 943 adults and 470 children on the Midland Health Board's intellectual disability database. Like any community member, people with intellectual disabilities require intervention of the mental health services on an episodic and sometimes continuous basis. The mental health needs of many of these people can be appropriately met by the generic adult and child adolescent mental health services. However, some may require more specialised intervention. In this regard, the Midland Health Board has in recent years appointed a consultant child and adolescent psychiatrist with a special interest in learning disability, including autism, and a consultant general adult psychiatrist with similar interests, along with some support staff. The board will continue to augment and develop these services as resources permit. We must put in more resources because the report has identified the appropriate areas and recommendations have been put forward which must be acted on as far as possible. Like all recommendations, they are mainly resource-driven.

The report notes that the board's residential services for adults with intellectual disability were formally de-designated from the mental health services approximately 15 years ago. In recent years the board has invested significant capital and revenue funding to relocate people from large residential centres to more home-based community settings. The report says that completion of this process will be continue to be a key priority.

The resources devolved to community places have brought a significant improvement for those with intellectual disabilities or psychiatric illness and for their parents. During my health board service, I have seen the great benefit of that, but we must do more to provide appropriate trained nursing and medical staff, along with back-up personnel. Regarding secure or special needs units, recommendations have been made with the support of the Eastern Regional Health Authority, the statistics have been given and the cost analysis has been done. Many of the recommendations are well thought out. So far in his portfolio the Minister of State has made very good use of his time, and I know he will consider the positive and well-researched suggestions in the report.

John Minihan (Progressive Democrats)
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I join previous speakers in welcoming the Minister of State to the House to allow us the opportunity to make statements on the very welcome report from the National Disability Authority. It is important that we debate in this House reports which deal with marginalised groups within our society. With previous speakers I compliment those people associated with the compilation of the report.

By their nature, reports will always bring up positives and negatives. We should reflect on reports in order to see if we are going in the right direction, to note where inadequacies have been highlighted and to see how we can make improvements. In the area of mental health, and the general health services, the fairest assessment anyone can make is that there will always be more to do. It will be the same in 20 years time and was the same 20 years ago.

We must acknowledge our progress in the mental health area over the past 40 years. There has been an opening up of something previously hidden in our society, and that is welcome. This is a two-facet operation. The health providers have a responsibility not to hide behind walls and deal with mental health and intellectual disabilities in that environment. There is also a responsibility among the service providers and public representatives to educate the broader community and society in the needs and advances. We must acknowledge the advances made in diagnostic approaches to mental illness. In the past, the mentally ill were treated as a single body of people and put into mental institutions. We have now broken down the area of mental illness and moved forward in areas such as that of intellectual disability, a term not used 30 years ago.

I acknowledge the funding increase noted in the report. I pay tribute to the Minister for Health and Children for the manner in which he has approached his responsibilities, particularly in securing the additional €25 million required to move to the next level. Having attended public meetings with the Minister, I have seen the way he has put forward the principle of the patient being the most important person, and has emphasised that the services are directed towards the patient and his or her interest. I also acknowledge the relationship he has developed with the various societies and organisations with which he has met.

I will comment briefly on the area of residential care, particularly care in the community. If we are to make progress in removing the stigma of mental illness and intellectual disability, we must embrace an association between patients, their families, the relevant organisations and the community at large. This has been a successful approach. Reducing the number of patients in institutional care and increasing residential care in the community is a positive step. Unfortunately, however, there have been examples of communities being somewhat reluctant to embrace this approach. While this is to be regretted, our approach to residential care in the community must run parallel to our responsibility to educate the broader community as part of our health strategy.

We should also acknowledge the dramatic increase in intensive placements, the expansion of support services in the residential area and the provision of day centres. In particular, we must acknowledge the support required by families for respite in all areas of illness. On an occasion such as this debate, we should acknowledge the great service provided by families, carers and voluntary organisations.

We cannot expect the traditional State-provided services to work alone in the context of a broad area such as mental illness. We must work in partnership with voluntary organisations rather than regarding them as the enemy. We all have the same objective and these organisations have something to contribute. Working in partnership with them will be the proper way to move forward in addressing this issue.

I will comment briefly on the establishment of the Mental Health Commission and the inspectorate. The inspectorate is welcome and its annual reports on mental health institutions will afford us the opportunity to set targets, meet shortfalls and address the issues highlighted in the reports.

It is important that everyone plays a role in developing and addressing the societal changes required if we are to place on a sound footing a proper mental health strategy. Under the leadership of the Minister, we are going about this in the proper way. I congratulate everyone involved in compiling the report, acknowledge its positive aspects and hope we can address the genuine concerns raised.

While there is no doubt that mental health services stood still for a period, since the late 1980s we have made improvements which must be acknowledged, although there will always be more to do in this area. I wish the Minister well in his responsibilities in this regard. I am sure we will continue to see growth and advances in the provision of services in the coming years and, I hope, greater understanding and acceptance by the general population of requirements in the area of mental health. I also hope the approach that medication can solve everything will decline and education of everyone will be enhanced.

Photo of Joe O'TooleJoe O'Toole (Independent)
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I welcome the Minister of State. It is timely that we are considering this issue at the beginning of a new year. It is difficult to have a general debate on this issue without people becoming very emotional. Given that most of those involved in this area have personal responsibilities, their views on the issue are understandable. While I do not know the rights or wrongs of dealing with mental health services, we should consider a number of fundamental issues.

It is important to note that we are dealing with people on two levels, namely, physical disability and intellectual difficulty. At adult level, this now reflects something we, in education, have been trying to cope with for many years. Some 20 years ago, which is not so long ago, special education was a clean-cut issue, divided into nice little categories. We had physical disability on the one hand and various levels of mental disability on the other and never the twain should meet. When we became more expert in identifying problems, it became increasingly common to find that people had a combination of problems. For example, a person with physical disability, perhaps a child with Down's syndrome, may also have had a mental difficulty.

I am trying to use politically correct terminology in this debate. Many years ago, in my former life, I found it is easier to speak about something as I saw it, rather than trying to go along with the fashion of the times. The various words used to describe ability, disability, handicap and so forth change with fads every ten years. What was acceptable ten years ago, for example, is often unacceptable now. One of the problems is that people attach different meanings to different words.

As a teacher, I was conscious that parents used to try to decide which school or educational institution was most appropriate for their child. Should their child attend a school catering for mental disability or one for children with physical disability? This resulted in schools becoming increasingly multidisciplinary, with students having multiple handicaps — excuse the term — or disabilities. This created all sorts of problems in the Department because it was structured to deal with nice, clean, simple categories of disability, an issue which the Leader and I jointly addressed on a number of occasions. For instance — the Minister of State will bear me out on this — as recently as 20 years ago I could not convince the Department of Education that there was such a condition as autism and it refused to recognise it. I also had difficulty convincing teaching colleagues that a certain condition led to people finding it difficult to read to the extent that they would read words in reverse and believe them to be real. This has always been a difficulty.

In the 1950s, one of the reasons Senator Jackie Brosnan, one of my predecessors both in the House and in the INTO, became a founder member of the National Adult Mental Handicap Institute, NAMHI, was to try to create awareness. During that decade, the INTO established a fund to bring British experts in the area of mental health, remediation and the teaching of children with difficulties to various towns here, including the Leader's town, to explain to parents that these were important needs. This was a time when to label a child was almost like pronouncing a sentence of death. We have come a long way since.

What is being reflected today is an issue the education system grappled with 20 years ago. It would be useful to talk to some of those involved in the administration of special education at the time. They had to come here to tell us that one cannot divide people up cleanly and according to difference because life was not that simple and there were different kinds of disability which had to be addressed together. I ask that Senators consider the issue from this point of view.

While I do not wish to reopen the row about rights-based legislation, I understand both sides of this argument, namely, the view that the State should be prepared to cater for citizens with disability or special needs and the argument made by Governments that to make this a constitutional or legal right would result in the courts becoming clogged up. Both sides are wrong. I do not share the Government's concern in this regard, particularly that of the Minister for Justice, Equality and Law Reform who has consistently taken this position for many years. I have always disagreed with him on the basis of my belief that if one is fair and does one's best, one will succeed. The way to do it is to look after people in this way subject to the State being able to do so. That is what it boils down to. It will always be subject to whatever resources are available. We should be brave enough to say that, which brings me to my next point, which is fundamental.

In a parallel discussion today, a Member took me to task on what I had said about the workers in Aer Rianta. I will not raise that debate now, so the Acting Chairman should not be worried. Having said how important it was that the Minister took a strong stand with those workers, he went on to talk about the extraordinary difficulties faced by elderly Irish men, in particular, in London. If we take people out of permanent jobs, will we not have to look after them at some stage in their lives? Should we not try to strike a balance? The same applies in this case.

There is a danger in society that we are not as connected to each other as in the past. When everybody lived in a provincial town, a rural area or even in a small city — there were communities within small cities — if there was somebody living down the road who had a child with a difficulty or a special need, everybody on the road was aware of it and everybody helped out and looked out for them. If the child was not fully responsible for themselves, one could be sure that if neighbours saw him or her go beyond the end of the road, they would call somebody. In that way, we all bought into it. That is not happening anymore. It is not that people are more selfish, although that is the way it is often presented in the media. People are not aware of what is going on; they do not have to deal with it themselves and they do not see their neighbours dealing with it. People suffer or conduct their business behind curtains and they are expected to carry on. What is happening as a result is that a person with a disability is becoming an extra tax on his or her parents, family and friends. That is emotive language but that is, effectively, what is happening.

This issue has always been there but it is a bigger problem now in terms of what we are discussing. Things have moved on. Nature is wonderful; it dealt with this in previous generations by means of life expectancy. In most cases, many of the people who had these types of problems did not have long lives. There is nothing as bad now as meeting the parent of an adult child who comes under the categories about which we are talking today. These parents spend their lives worrying about what will happen to their child when they die. These are the issues on which we need to reassure people, and this could be done through openness. All people want to know is that the community, which means us, will do its best. I do not see this as a party political issue. Those of us on this side of the House should never be happy with how much the Government does in these situations and I do not believe those opposite will ever be happy either. I imagine the Minister of State will never be happy that he can do enough. That is the way it should be and we should apply pressure constantly.

Will the Minister of State try to sell this to a cynical public? We need to put more resources into this area. Whatever happens, we must prioritise this issue, and not only when somebody wishes to run out and use the old cliché about the most vulnerable group in our society, which could be said of approximately 20 other groups. This is a group of people for which we can do something and which we can support in a positive way.

The most attractive aspect of it is that the more we do for these people, the more they can contribute to society. Many of these people have a contribution to make, which can be positive and from which we can all gain. I have often heard it said by those working with people with various disabilities that the response of people with needs reverberates through the helpers and creates a more open society, makes people feel good about themselves and about society and, consequently, raises the level for everybody. That is important but it must be on the basis of Government subvention and investment. That is the Minister of State's job. He will never do it well enough as far as I am concerned but I will be happy as long as he is not doing it well enough as far as he is concerned and then I will believe people are doing their best.

Photo of Geraldine FeeneyGeraldine Feeney (Fianna Fail)
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Like other speakers, I welcome the Minister of State to the House. I also welcome the report of the National Disability Authority and commend the body on its excellent work on behalf of those suffering with disability. It is recognised, maybe not by all sides of this House but by those outside it, that the huge investment of funds by this and the previous Government has gone a long way to lighten and lift the burden of those suffering with disability and their carers. At a time such as this, when we talk about autism, the Special Olympics or any type of disability, I always use my health board area as a barometer. Nationally, that is a good way to go because what is good for the North Western Health Board is good for the boards in the east, west and south.

Officials and those who have gained from the investments made in the North Western Health Board are delighted with the investment made. An investment of €20 million has been made in learning disability over the past three years. That is a huge investment in such an area. My mind boggles when I ask how much investment has been made in areas outside learning disability. If that is not enough, I was told a half an hour ago that a further investment of €2.1 million was made last July. I say that tongue-in-cheek because the day will come when I will go begging to the Minister of State saying we have no money and he will say I am on record as saying I was delighted with the investment made.

There are 1,836 people with a learning disability in my health board area. Some 444 are living in Donegal and 892 in Sligo-Leitrim. The majority, 86%, live at home, 19% are in residential services and 12% are in small community home groups. In my opinion, and in that of those availing of the service, the service is running well and has major supports. The supports come in many different forms but there is one which provides support to carers. There are 338 carers in my health board area and they provide 35,000 hours per year of home help and carer support. They go shopping for or to day care with the person they are looking after. The sufferer could not manage without that support which must be acknowledged. We also have two child psychiatrists with a special interest in learning disability and I am told approval for a third is currently being processed. There is a total of ten psychiatrists in the health area, two of whom have a special interest in learning disability or other intellectual disability.

The Minister of State will be interested to hear that some of the investment in our health board area has been used to carry out a review of the learning disability needs assessment, which was touched upon by Senator O'Toole. A plan has been put in place and all those with learning disabilities, their parents, families and carers were interviewed. A plan has now been put in place for their future for the next 15 to 20 years. As Senator O'Toole pointed out, people with special needs or learning disabilities age more quickly than do the able bodied. How many times have we met parents of those with disabilities who live their lives worrying about what will happen to their son or daughter when they die? They feel it is a terrible burden to ask a brother or sister to look after a sibling with a handicap. I know the North Western Health Board is the only one to have carried out such a review. Perhaps it might be looked at and used as a blueprint for other areas. I know it has a plan in place for all its people when they reach the age of 55 and upwards. They will be put into retirement homes. Some of them will be allocated places near where they originally came from and that is also good for people.

We have 400 dual diagnosis patients, which is 400 too many. Having carried out a little research before I came in to speak today, I feel there is a problem. It has not been highlighted by other speakers. It is almost a blocking point when someone with a learning disability turns up at a psychiatric unit. There is a fear that the person is coming from sheltered accommodation or a residential home and that there may not be a willingness to take him or her out when the person starts to feel a little better. That is only something that I have felt from talking to different people, but perhaps the Minister might examine it. I would hate to think that a consultant or group of consultants were blocking something on such a basis.

One of the recommendations of the report is for four regional units to be geographically distributed. They must be available to support community teams by providing specialist acute assessment and treatment for the dual diagnosis group. I agree with that and the community and multidisciplinary teams are essential if we are to make progress. However, I fear we are becoming too regional. I envisage in my area that, if our regional unit was based in Galway, someone from as far away as the Inishowen peninsula would have a drive of more than five hours to get there. A person who already has special needs is vulnerable. They have vulnerable minds and one is taking them away from their own setting. I would like more clarification of that point. Otherwise, I can take it up with the people who commissioned the report.

Finally, as I said before, the Minister is very caring and compassionate and we in the House know that. The report is in his good hands. I ask him to address the needs, particularly those of the dual diagnosis group, because it is at this that the report is really getting.

Photo of Ulick BurkeUlick Burke (Fine Gael)
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I welcome the opportunity to contribute to the discussion on this NDA report. It is very important that we discuss it. However, we are discussing it at the first sitting of 2004 and it is a pity that we did not deal with it during 2003, which was the year of people with disabilities. I have two great concerns. As a member of the Western Health Board over several years, I know that tremendous improvements have occurred in terms of resources and additional places. I sincerely welcome those as part of an ongoing process. However, tragically, in the Western Health Board area and at St. Brigid's Hospital in Ballinasloe, we have several persons, most of them young, who are literally condemned to a placement which is totally unsuitable for those with special needs. There are people with intellectual and physical disabilities. I can find no words other than "criminal abandonment" if any structure or system allows that situation to continue indefinitely and especially after the year just gone. Those people will remain there this year, next year and three years hence.

It is absolutely incumbent on the Minister to examine, within the mental health institutions that exist today, the number of people who are similarly kept in totally unsuitable circumstances. The system that allows that to continue is indicted as a failure. It is my simple plea to the Minister today that he stop that practice. The number of various standard mental institutions has declined. Tremendous work has been done over the years through taking people from institutions and placing them in the community, sometimes in rented accommodation. We must acknowledge the great acceptance by the community at large of this new departure whereby people who were literally — I hate to use the word — locked up in institutions are now brought into the communities and willingly accepted in the towns where there were psychiatric hospitals and facilities over the years.

I know the case of St. Brigid's Hospital in Ballinasloe best. It has had a great reduction in the number of patients held in it for treatment. They are getting excellent treatment there. I am not in any way doing down the service provided in those institutions, but it is a welcome development that we are taking people from the institutions and placing them in the community. I am well aware of the fact that there is a solid core of people who were themselves as adults — perhaps as young adults — put into those institutions and literally abandoned. Thankfully, that day is now gone and a process is in place where those who need to go there do so, rather than being abandoned for whatever reason, as was the case in the past. My plea to the Minister is that he examine in great detail the number of persons with physical and mental disabilities who are retained within those institutions and have no place to go.

My other point concerns what Senator O'Toole said about the elderly who have what were children and are now young adults who are themselves ageing. Those elderly parents are in crisis and do not know what will happen to their children when they die. Over the years, they have provided sterling support for them in their homes. I have an example. Many public representatives on tour in my own constituency visited a facility where a mother of about 75 years of age said that she had to drag her young son, an able-bodied person, to the wall so that he could put his feet against it and crawl into a standing position. She felt totally unable to help him.

While we have such situations in communities, perhaps with people getting only a daily or hourly service of care in temporary centres, there is a great obligation to provide and focus whatever funding may become available. I recognise that it may be scarce, but people are in crisis and shouting for help. They cannot get an answer from anyone. It would be worse were it not for the voluntary effort of parents, as Senator O'Toole said, and many other groups that came together over the years to provide for, recognise and highlight problems in societies, communities and families.

Until those voluntary groups became organised and made pleas to public representatives, health boards and Ministers over the years, there was no recognition of the plight of families and communities.

Single parents who have the cross to bear of a mentally or physically handicapped person are forced out to work. They are also faced with a 24 hour care service need for a severely handicapped person. Such people will get respite for just one weekend in four, five or more, perhaps from late Saturday evening when he or she finishes work until late Sunday evening when the person must be collected and taken home.

While we can mention the impressive global figures to which the Minister of State already referred, I want him to identify the special and specific needs of a hard core which is only represented by a number. The tragedy is that they are neglected. I want the Minister of State to consider the people in our mental institutions today because their case is one of criminal abandonment in a modern society.

Michael Brennan (Fianna Fail)
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I welcome the report, its findings and the many challenges it presents the Government. I compliment the Minister of State on the comprehensive report which also outlines past achievements. I have no doubt that, with the Minister of State's experience, his commitment to the health services and his service to the Mid-Western Health Board throughout the years, if any Minister will implement the findings, it will be him. I wish the Minister of State well with his responsibilities in regard to youth and children.

Yesterday was an important one in Limerick because an eight year old girl was honoured for her bravery by the President, having undergone three bone marrow operations to save the lives of her three brothers. I appeal to the Minister of State to consider the lack of a paediatric immunologist in the country and I have no doubt that with his experience he will have the position filled on a national basis. Each health board may only have to cater for a small number of people but there are 500 sick children and perhaps the Eastern Regional Health Authority and Crumlin Hospital could meet the need. I wish the Minister of State well in the years ahead and ask him to implement the findings of this report.

5:00 pm

Tim O'Malley (Minister of State, Department of Health and Children; Limerick East, Progressive Democrats)
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I thank Senators for their remarks about the report. As I said, it is a useful report which will be of huge benefit to the Department of Health and Children and those interested in the disability sector. I compliment the NDA and everyone who was involved with the report. In particular, I thank the Senators who have taken the trouble to read the report and present themselves to the House to speak about it even though it was published just a few days ago. This shows their commitment.

I listened attentively to the speakers and I agree with Senator Ulick Burke's point about figures and the need to remember we are dealing with people who at the cutting edge. We constantly state that in planning for the future of the health services, putting the patient first is the fundamental issue. Nowhere should that be more appropriate than in the disability area.

I am delighted today's debate has not been political and I agree with Senator O'Toole that this issue never should be political because every side of the House has had a huge involvement and interest in it. Unfortunately over the years, the position of society, not to mention politicians, Governments and the Opposition, regarding service provision for the intellectual disability and mental health areas has been inadequate to put it mildly. This is a societal problem, although this is an easy point to make on reflection because it is not fair to blame certain people.

Senator O'Toole spoke about the 1950s and he is correct in regard the problems of the health service in coming to grips with autism and so on. Some five or ten years ago I met teachers in training in Limerick and even they had problems with the curriculum in regard to facing up to autism, ADHD and so on, because more and more information about these issues is being published. Therefore, when an organisation such as the NDA goes to the trouble of doing such fantastic work in the disability area, there is a responsibility on policy makers to take it into consideration and it will be of huge benefit to everyone.

I thank Senators for their contributions. I will never be happy with the health services because no matter what one does, they can always be improved. We must always strive for excellence. While much has been done, more needs to be done, especially in the mental health area.

I spent three hours last night at a debate in the Royal College of Surgeons about the mental health services. While there have been huge changes in the health service, many consultants and service providers have fears. Part of those fears is the changes the Government will implement in the service area. I have no problem with this and I recognise such fears. One of the problems raised by service providers in the mental health area is that there is inadequate consultation with them. It is a huge omission. One can commission experts to review issues and they hold consultations, but only with a small number of people. They do not consult enough people. It should always be necessary to keep meeting and listening to the service providers — the people at the coal face.

I welcome this report because it points out many inadequacies in services for the disabled and I assure the House that the Department of Health and Children will do everything it can to develop policies to fill the gaps in the service. I thank all the Senators who contributed today.