One hour and 30 minutes will be allowed for the debate this evening.
Private Members' Business. - Services for People with Disabilities: Motion.
I wish to share my time with Deputies McManus, O'Sullivan and Burton.
Is that agreed? Agreed.
I move:
That Dáil Éireann, recognising that 2003 is the European Year of People with Disabilities, supporting the wonderful national effort that has gone into the preparations for the Special Olympics World Games, conscious of the fact that there is a growing crisis in essential services for people with disabilities throughout Ireland, and noting that no allocation whatever has been made for new services and places in 2003, calls on the Government to immediately:
– allocate an additional €35 million for new places in the current year;
– arrange to meet the national bodies representing people with disabilities to agree a plan to eliminate waiting lists for all essential services within three years;
– publish the Intellectual Disability Database, which contains the most up-to-date information on waiting lists for people with intellectual disabilities;
and
– bring forward the long-delayed Disability Bill, on which agreement has now been reached within the consultation process established by Government.
While Ireland is a rich country, now one of the richest in the world, a small population of vulnerable citizens face frustration, distress, fear and pain. They face these conditions because of Government choices, and for no other reason.
When the Book of Estimates was published before Christmas, there was palpable shock in the community of people with a disability. Nothing of significance had been allocated to the services on which many of them and their families depend. Many of these services throughout the country are running in the red, dealing in the main only with emergencies. All of them report long waiting lists for every element of service. It was clear from even a quick look at the Book of Estimates that there was nothing there to enable the waiting lists to be reduced. However, there was at least the consolation that the budget was to come. For at least the past 20 years, every Minister for Finance had made an allocation in the budget to enable new places to be created and some inroads were made in the waiting lists.
In recent years, as a result of a plan drawn up by the former Minister for Health and Children, Deputy Cowen, the amount allocated had been substantial and there was a great deal of hope in the community that the continuation of the plan might result in the numbers on waiting lists declining. There was, therefore, deep shock among people with disabilities throughout Ireland when not one additional cent was allocated in the budget. This was despite pre-budget submissions from individual organisations throughout the country, from the nationally representative umbrella groups like NAMHI, the Federation of Voluntary Bodies, the Disability Federation, the Forum of People with Disabilities and others. Not one cent was allocated in a budget that accounted for more than €31 billion of income and more than €26 billion of current spending. There was not one cent for additional places or services for people with disabilities. In one of the richest per capita countries in the world, people with disabilities were immediately condemned to wait even longer than before for essential services.
To add insult to injury, the Government spin machines immediately went into overdrive. The Taoiseach said:
It is terrible. We have done really well by people with disabilities for the last few years, and I am really determined to get back to that, but right now we cannot afford to be generous.
This patronising and condescending tone was compounded by the announcement in the budget by the Minister, Deputy McCreevy, not about disability or people with disability, but to the dormant accounts fund. He said the fund would be established, using unclaimed dormant account money from financial institutions and that the funds disbursed would be spent on charitable and community projects, with a particular focus on children with learning disabilities.
Just a few months earlier, the Government produced a Disability Bill which ignored the long-held demand for rights on behalf of the disability movement. It withdrew the Bill under pressure from an outraged movement, then in the budget the Minister for Finance told people with disabilities that the only progress they could expect was through charitable donations from the dormant account fund. The passage in the budget speech, in a way, sums up the Government's attitude to disability. It is prepared to pay lip service and to distribute crumbs from the rich man's table, but when the going gets a bit tougher, people with disabilities know what they can expect from the Government. People with disabilities are the last to benefit when the economy is growing and the first to be sent to the end of the queue when the Government decides that public spending must be tightened.
We do not know the extent of the crisis faced by people with disabilities because the Government cannot, or will not, publish the data. The last time the intellectual disability database was published was in 2000, even though it was supposed to be available annually. When it was last published, it outlined that 1,711 people currently living at home need a full-time residential service, 861 people need a day service, 1,014 people need a respite service and 462 people have no level of service whatever. Almost 500 people with intellectual disabilities are, in effect, locked in psychiatric hospitals and many of them, as we know, are held in appalling conditions. Life is just as grim for people with physical, sensory and other disabilities. Overall, 70% of people with disabilities are unemployed and, according to Combat Poverty, a household headed by a person with a dis ability is likely to be below the poverty line. There is no right of advocacy, no law relating to access and no means of redress when rights are ignored. What do these statistics mean? Many of those living at home, in increasingly urgent need of residential facilities, are middle aged or older and depend on frail and elderly parents. An elderly man, who was taken into residential care by a Dublin agency last year, had to be treated as an emergency case because his mother, on whom he had depended, had just died at the age of 102.
Highly disturbed adults with behavioural and emotional problems, with which their families can no longer cope, need to be recognised by the State as citizens with the right to support. The only support they receive, however, is a lengthening queue. Respite care – a break away from home for a week every now and then – is often the only support given to families. It can bring enormous relief to families; a chance to gather strength so they can continue to carry out the work of the community. The care of an adult with intellectual disabilities is often accompanied by physical, emotional or behavioural problems, such as violence, incontinence, shouting and the self-infliction of injury. It involves commitment and dedication 24 hours a day, seven days a week. The arrival of disability into a family, in the absence of support from the wider community, can mean heartbreak and despair.
It is a mystery that any Government can turn a blind eye to such a problem. We need to ask how much money is needed to solve it. In my opinion, if we were to put a reasonable figure on it and to conduct a referendum on that basis, we would secure a resounding majority for action, even if the costs involved necessitated an increase in taxation. Such a measure is not needed, of course, as approximately €120 million in extra current revenue, with perhaps an additional €80 million in capital revenue, would make significant inroads into waiting lists. It would help people to live in dignity and comfort, enable services to be put in place to contribute to life-long education, help train many people for work and give hope for the future. A sum of €120 million spread over three years, for example, is a pittance, given that the annual total budget is €31 billion. The additional expenditure required represents a lot less than 0.5% of our annual budget. When one considers that the public finances are still capable of producing massive current budget surpluses, it is to our shame that we choose to spurn our most vulnerable citizens.
Deputies:
Hear, hear.
The Taoiseach knows that 2003 is the European Year of Persons with a Disability, because he walked sneeringly past a demonstration of people with disabilities and the organisations representing them on his way to launch it.
That is right.
It was a disgrace.
The website of the European year spells out its objectives and reasons in clear and simple terms. There are 37 million people with disabilities in the European Union; that is one in ten of us. Disabled people are people with equal rights as workers, consumers, taxpayers, politicians, students, neighbours, family and friends. Disabled people are not treated equally, however. A recent European survey showed that there is a serious lack of understanding of the meaning of disability and the amount of people affected by it. Although disabled people should be treated as equal citizens with the power to speak for themselves and not as objects of pity or charity, they are often excluded from society through poor education and unemployment, which lead to poverty. This year represents an opportunity to change the future for disabled people – a good future for disabled people means a good future for all people.
Hear, hear.
The best way to mark the European year would be for the Government to reverse its extraordinary decision to allocate nothing for new places in this year's budget. It is clear from the website of the European year that people from all over Europe will be encouraged to look at Ireland in admiration because of the extraordinary community effort that has gone into the preparations for the Special Olympics World Summer Games. The Government, including the Taoiseach, has shown considerable generosity of spirit and commitment in relation to the games. It realises that the games will demonstrate to the world that the only limits to achieving full human potential are the barriers we put in place. The corporate, community and individual goodwill that exists towards the games demonstrates that there is huge support for anything that will tear down the barriers. The generosity of the Government in that context contrasts sharply with the mean-spirited way in which it has responded to the range of issues and obstacles being faced by people with disabilities.
As a result of the cutbacks we face, service providers are being forced to tell parents of young people with intellectual disabilities of school leaving age that no service can be guaranteed for them this year, the year of people with disabilities. As I have said, the Government has failed to publish an up to date intellectual disability database. The conditions in Drumcar, County Louth that were reported recently will be replicated elsewhere if staff shortages continue to increase. Services for people with physical and sensory dis abilities have been frozen in effect and parents and families of people with disabilities are being relied on increasingly to cope with the additional stresses and costs involved with less and less support.
The Government is moving away from recognising rights and towards expecting people with disabilities to rely on charity. It should be ashamed. It has promised to bring in a rights based disability Bill, after the fiasco of its last attempt. A consultation process was established and has reached a broad consensus. That consensus repeats what the disability movement has been demanding from our hard-of-hearing Government for several years. It demands a statutory right to an independent, inclusive assessment of needs at the time of onset or diagnosis of the disability, together with a statement of needs arising from that assessment. This has remained a bottom line demand of the disability movement for many years. I hope that, before this debate is over, the Government will finally and without further delay commit to honouring its promises and undertake to bring in the Bill this year.
This motion does not demand a lot, certainly not more than we can afford. People with disabilities readily acknowledge that resources were made available in the past for vitally needed services. However, it is not acceptable to be told that now they must go to the end of the queue. The best measure of a civilised society is surely to be found in how it protects those who are vulnerable, how it enables those who have barriers to overcome and how it listens to those who have no voice. By that standard and by any measure, even allowing for the investment already made, the Government might say it has a lot done but it has an awful lot more to do.
Every Deputy in the House knows of people with disabilities and their families. I welcome those with disabilities and their representatives in the Public Gallery. I know that Government Deputies will speak on this motion and say that they support people with disabilities. However, the only support to give is to walk through the lobby tomorrow night and vote for this motion. I commend the motion to the House.
I welcome the opportunity to contribute to this important debate. I thank Deputy Moynihan-Cronin for ensuring this important issue was taken in Private Members' time. When cutbacks are levelled at the disability community by the Government and it is simultaneously trumpeting its promotion of the European Year of People with Disabilities, a debate like this offers an opening for those without power to speak and be heard, people with disability and those who care for them.
When I attended the launch of the Year of People with Disabilities, I was struck by the fact that powerlessness can make people brave. So many people turned out and stood their ground in the rain to get a message across to the Govern ment that what was being done was wrong and that cutbacks were affecting them. When the family commitments of these people is considered, because they are living with disability, it is to their credit that they came from Counties Kerry and Donegal – one woman from Cork got up at 3.45 a.m. to attend. They stood in the rain and cold when they could have been inside enjoying the razzmatazz, listening to the brass bands and enjoying the speeches. For all that, they were insulted by the Taoiseach. I hope there will be an apology during this debate for the ill-grace and bad manners of a Taoiseach who does not understand the pressure these people are under and the point they were making.
In the Year of People with Disabilities, people with disability are being sold a pup. In a year when Ireland is hosting the Special Olympics, our special Olympians and their companions are facing disappointment, cutbacks and Government failures. As spokesperson on health for the Labour Party, I want to focus on one aspect of that failure. Despite repeated questions inside and outside this House, the scandal persists of the continuing use of psychiatric institutions for the placement of people with a mental disability. Why should this matter? It matters because such placement is totally inappropriate for the needs of those with mental disability and because, as the Amnesty report just published shows, our psychiatric institutions are in real trouble and require reform, funding, resources and staffing.
I can talk about the reality of what it means to a parent to have a child placed in such an institution but I would prefer to let a parent speak for himself. I quote from a letter I received today describing his experience:
My youngest daughter Sheila is 40 years old this month. She is autistic. In 1984, the health board placed her in a psychiatric hospital, ignoring my protests and assuring me it was only a temporary measure until a place could be found for her in a suitable facility. Some time in 1985, she was threatened with drowning in a bath. She told me about it. She was terrified to the extent that she would only whisper to me. I complained to a friend who alerted the hospital that I was giving bad news about them.
I was asked to attend a meeting in the hospital. I was ambushed into a meeting with the person in charge of the hospital and about 30 doctors and nurses as well as the hospital's solicitor. I was not introduced to the gentleman, nor was I allowed to speak. He verbally abused my daughter for more than 30 minutes. I asked him why she was terrified. He did not reply to this. To this day, I do not even know his name. The full implication and purpose of that ambush was to give me a clear message, to keep my mouth shut or it would be worse for my daughter.
I have never been so intimidated in my life. So when they started forcing my daughter into strait-jackets, I knew, but felt powerless to protest. After some years, thankfully, that practice ceased. All the years she was in that hell-hole, she was abused by the use of very potent and dangerous drugs. No human being could withstand such treatment and in 1999, she fell ill and was taken to the general hospital.
Her family were called and told she had five hours to live, but live she did and recovered. I blame the excessive use of drugs over a very long period of years for that occurrence. The excessive use of drugs has also distorted her beautiful speech to the extent that I can no longer understand what she is trying to say to me. During the last few years, my daughter has been subjected to an increasing amount of time in the silent room. When I brought her home for good in March of last year, I asked her how much time she spent in the silent room. She glared at me and said: "All day, every day." Why?
I have no doubt that there is another side to this dreadful story. Many of those who work in our psychiatric institutions are heroic in meeting their duties in difficult and demanding conditions. However, the distress of this parent is real and cannot be disregarded. The Minister for Health and Children needs to explain why this woman and others are still being placed inappropriately even though we now have the necessary resources, which were unavailable to any past Government.
The plight of the mentally ill and the intellectually disabled in Ireland is a matter of national concern. The Amnesty report published this week highlights the failure of the Government to address issues as fundamental as legislation, resources, staffing and funding to provide a reasonable standard of mental health care, which is all that is sought. It often amazes me how quickly we in this country condemn and express disgust about facilities for the mentally ill in other countries – in the developing world, for example – while rarely is condemnation expressed about facilities here in Ireland.
The Amnesty report should be debated in this House in Government time. It should lead to a new approach to psychiatric illness and mental health. It should end the placement of people with intellectual disability in psychiatric institutions once and for all. However, we know this will not happen. Now that the general election has been won, the Government is paying its bills for the goodies it gave out before the election. It is doing so not by raising taxes or borrowing money but by targeting the weakest and most vulnerable in our society. That is why there is a reduction of overseas aid this year, why we are seeing cutbacks in our health service and why the Government has chosen to make cutbacks in the area of disability.
The fact that this is the Year of People with Disabilities does not matter a whit, but like the rain falling outside the Mansion House, the fall-out of these cutbacks will be felt by those with disability and those who care for them. At Ques tion Time today, the Minister of State at the Department of Health and Children, Deputy O'Malley, brushed aside concerns about emergency cases of people with disabilities expressed by members of the Opposition. Emergencies will be looked after he reassured us, he is in charge and will make sure of that. The reality is that there is no budget to cope with emergencies when a relative dies or suffers ill health and can no longer care for a disabled family member. What is likely to happen? While a place will be found it may be in a psychiatric hospital. The experience of a parent of a person with autism, quoted in the report by Amnesty International, will be repeated. The report states:
Living alone I was unable to cope with her full-time and I had to hand her over to the health board and she was placed in a psychiatric hospital. I was assured that the placement was a temporary measure until such time as a place arose in a more suitable centre. That was in 1994 and she was still there until I rescued her in 2002.
This is happening as we speak. The fumbled and feeble response today by the Minister of State, Deputy Tim O'Malley, convinces me it will continue to happen, possibly to an even greater extent as the numbers grow and the failure by the Government to meet the needs of people with disabilities becomes more acute.
Let us be under no illusion. There is no inevitability about this state of affairs. The problems at St. Mary's at Drumcar can be resolved and the practice of incarcerating disabled people in psychiatric institutions can be ended. However, the political will and determination is needed to address a scandal that should belong solely in our past, yet which is, disgracefully and unnecessarily, part of the present. Unless there is a sea change in Government policy this will continue.
It is important to remember that outside this House many people are caring for loved ones who are suffering from disability and who require constant care and sacrifice. They are the unsung heroes who are often unacknowledged. The European Year for People with Disabilities should have been concerned with acknowledging the importance in our society of people with disability and those who care for them. It is a recognition that has been given by local communities with regard to the Special Olympics where enormous efforts are being made to look after people with disabilities who are coming from other countries. Communities are rightly excited by the project of creating hospitality, including a home and accommodation that is secure, friendly, comfortable and welcoming. By contrast, the Government has failed to provide a similar kind of comfort.
I commend my colleague, Deputy Moynihan-Cronin, for proposing this motion on behalf of the Labour Party and for giv ing us the opportunity to place this important issue at the top of our agenda. The purpose of the motion is to ensure it is also placed at the top of the Government's agenda. It seeks to ensure that the Government will release funds to address the urgent problems of people with disabilities, their families and carers. By ensuring this debate we hope there will be a change of heart and that funding will be allocated.
My colleagues referred to cases brought to their attention concerning families and individuals who have no place to go, are worried about having a place to go or who are inappropriately placed. I wish to draw the attention of the House to the views of two service providers who are dealing with this issue on a daily basis. The Daughters of Charity of St. Vincent de Paul state:
More than 50% of emergency residential placements are not even on the waiting list but occur generally due to family carer crises, death, serious illness, abuse, etc. The other 50% are addressed in the normal course of events through new development funding. This year, no emergencies will be addressed, thus doubling the number of emergencies. Waiting lists will grow at an increasing rate. Children leaving the school system in July-August requiring day service places will have to stay at home.
The Minister of State, Deputy Tim O'Malley, will be familiar with the situation at the Brothers of Charity, Bohermore, Limerick. The director of services states:
There are no new developments. We have a waiting list of 36 people who require residential services; 25 people requiring day services and over 150 children who urgently require educational and health related services. None of these men, women and children will get a service in 2003.
There is no provision whatsoever to respond to emergencies. Experience tells us that there will be at least three emergencies in the coming year, usually resulting from the death of an elderly parent or carer. No provision has been made for children who finish their schooling and who anticipate a service from the Brothers of Charity.
This is the reality according to the service providers. We ask the Minister, the Minister of State and their colleagues on the Government benches who will vote on this motion tomorrow, to please address this issue in a caring manner and in a way that understands the reality I and my colleagues have outlined and which those in the Gallery must contend with every day of their lives, 24 hours a day, where they do not have a placement.
We have been calling for rights-based legislation for some time and the issue has been on the agenda for approximately six years. The Government knows what those lobbying for it want and that the Bill last year was withdrawn because it was not rights based and did not pro vide for an assessment of needs and the right to have them addressed. It also failed to provide that people with disability would have the kind of services they require, whatever their disability, be it physical, sensory or intellectual. The promised legislation must address these aspects. Anything less is unacceptable. The relevant disability law in the United States is a good example of rights-based legislation.
We are now a rich country and we can afford to look after people in various categories of life. However, surely we cannot afford to neglect those who are most needy. We cannot afford the present situation to continue where parents will die and where, for one reason or another, carers will no longer be able to respond to the needs of their family member. There is no funding and no places are available.
The Government must address this issue. It is a question of priorities. If the public was to be canvassed on priorities in terms of expenditure, the needs of people with intellectual, physical and sensory disabilities would be among the top, yet it appears that the Government is ignoring this. If the consultancy, advertising and PR budgets of two or three Departments was channelled into this area the necessary funding would be provided, including the sum of €35 million outlined in the motion.
On behalf of my colleagues and, even more, on behalf of those who deal with this situation on a daily basis, I make a heartfelt plea to the Government to readjust its priorities and provide the required funding. In the past couple of weeks there has been widespread debate on the payment of millions, if not billions, of euro in compensation to those who were neglected in residential institutions and those, such as haemophiliacs, who were also neglected by the State. Let us not make the same mistake in this current era of plenty and wealth. Let us provide for our least privileged citizens, including their basic needs, in terms of the allocation of funding and the enactment of rights-based legislation this year.
Therefore, if people need something they will have a right to it and they will not have to struggle, lobby, come to the Dáil or attend public meetings to attain that right for the weakest of our citizens.
I urge the Minister to heed this motion, provide the funding and ensure this struggle does not continue for many families this year so they will not have to face the problem of not knowing what to do with their disabled family members.
This motion is really about the credibility of the Government six years into office in light of its record of bungling ineptitude and lack of management skills, despite the large sums of money which the Minister of State will undoubtedly recite for us. We are sick of the apologies and we want competence in the management of resources.
My colleague, Deputy O'Sullivan, spoke about the letter from St. Vincent's on the Navan Road in my constituency. I attended a meeting that the Minister kindly hosted with parents associated with that institution. Some of the most disabled children in the institution were offered enhanced educational services as a consequence of the various court judgments. Because of the absolute failure and incapacity of both the Ministers for Education and Science and Health and Children to come together to look in a holistic way at the needs of the children, parents have been left walking the streets of Dublin 15 and Dublin 7 for the past six months. When this issue has passed, I am sure we will get another apology, but it is essential at this stage to say that it is not simply a question of money, but a question of this tired and jaded Government, six years into office, not having the capacity to produce essential reform.
If the Minister follows my contribution with another list of the moneys that he has allocated, we will not want to hear it. We want to hear that the children who need both educational and medical services are receiving them and that the Minister and the Department have the capacity to sit down, as many people in small business do, and make a list of what needs to be done. They must establish a timescale and make plans.
What has happened so far in respect of the institution on the Navan Road is a double disgrace and involves the rights that the parents have identified as being the health-related and educational rights to which their children are entitled. Most of the parents around the rest of the country have not even been informed by the Departments of Education and Science and Health and Children that their children are also entitled to those rights.
I move amendment No. 1:
To delete all words after "That Dáil Éireann" and substitute the following:
– recognises the need for the further development of services to people with intellectual, physical and sensory disabilities and those with autism,
– approves the Government's commitment to put in place an enhanced level of service provision in line with the programme for Government,
– commends the actions taken by this Government and the former Government since 1997 in meeting this commitment, which include the allocation of additional funding of €555 million; and
– notes the commitment in An Agreed Programme for Government to conclude the consultation process and publish an amended Disability Bill in 2003.
I am pleased to have an opportunity to speak on issues related to the provision of services for people with disabilities and to outline what the Government is doing to meet the needs which have been identified for this population group. I assure the Deputies that there is an equal amount of compassion on this side of the House regarding the issues of disability, be it of an intellectual, physical or sensory nature. Nobody has a monopoly of compassion in this area.
The significant progress made in terms of the growth in funding available for the sector in recent years is indicative of the Government's commitment to the ongoing development of Department-funded services for people with disabilities. Since 1997 there has been an unprecedented level of investment in this regard. Additional funding amounting to €555 million has been invested, which has enabled substantial progress to be made with regard to the development of residential, respite, day, therapy and other support services.
Additional revenue and capital funding of €327 million was provided for intellectual disability and autism services between 1997 and 2002. This revenue has provided approximately 1,700 additional residential places, which are mainly based in the community. This figure also includes new residential respite places created in 1997 and 1998. Between 1999 and 2002, around 465 extra dedicated respite places were provided. In addition, 2,950 new day places were created.
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 October 2002 was 452, down from 571 in 2001 and 970 in 1996. By any yardstick, that is a fantastic achievement. The new accommodation provided has included community based homes and a number of residential and day complexes.
Since 1998 approximately €14.6 million has been put into the system to enhance the early intervention, pre-school and multi-disciplinary support services for children with intellectual disabilities and 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 these disabilities who present with major behavioural problems and therefore require a more intensive level of support.
The 2001 report from the national intellectual disability database is being finalised. Preliminary information indicates very substantial increases in the numbers of people accessing services, particularly residential and respite services. These figures reflect the impact of the 2000 development programme and indicate that between 1996 and 2001, there was a 10% increase in the number of persons availing of full-time residential places.
In the area of respite services, the increase has been over 200%. The numbers in receipt of multidisciplinary services have increased by over 300% while the number of children accessing early intervention services has risen by over 200%. In addition to providing funding for new service developments, we have made a significant allocation to meet identified needs in existing services. These needs arise as a result of the changing profiles of persons with an intellectual disability or those with autism in the services – in particular the residential services – who are increasingly older and more medically fragile. There are also issues of under-funding of base budgets and a need to consolidate elements of services previously funded from other sources such as fund-raising. My Department has sought over the years to address these issues as resources have permitted and to this end allocated additional revenue funding of €27.2 million between 1998 and 2002. The recent report commissioned by the Brothers of St. John of God in St Mary's, Drumcar, commented on staffing levels as well as other service related issues. I am confident that progress will be made in addressing these issues as a result of the discussions which are under way between my Department, the North-Eastern Health Board and the religious order.
Approximately €180 million in additional funding has been provided since 1997 to maintain and develop services to people with physical and sensory disabilities. Such services include residential services, respite services, home support services, including personal assistants services, therapy services and day care services. Over €20 million, which represents a significant proportion of the funding, has been provided specifically for home support services. A further €71 million has been provided in once-off grants for capital projects and the provision of technical aids and appliances.
I met various groups representing people with disabilities and each one is made up of excellent, committed people, many of whom are volunteers. They do fantastic work. All of them acknowledge the progress that has been made over the past several years. I have visited many facilities within the disability sector since being appointed as a Minister of State last year and I intend visiting many more in the coming months. I use this opportunity to record my appreciation of all staff and carers involved in looking after people with disabilities. It can be a difficult job and it is only right that we work closely to provide appropriate standards of care in our services.
It is essential that the Department can access at a national level data which relates to people with disabilities who use or may need to use the health services. A national database can inform planning, service development, prioritisation of service needs and resource allocation at national, regional and local levels. I take this opportunity to answer allegations that my Department delayed the publication of the 2001 and 2002 annual reports of the national intellectual disability database in order to conceal the true state of waiting lists for services. The annual report is compiled from the regional data sets provided by the Eastern Regional Health Authority and the health boards. A delay in the submission of one regional data set meant it was not possible to compile the information which forms the basis of the annual report. This was the case in 2001 and 2002. The 2001 report is currently being finalised and will be published next month and the 2002 report will follow in early summer.
There has been no attempt by my Department to delay the publishing of these reports. On the contrary, the Department has made extensive efforts over a considerable period of time to obtain the delayed information in order to facilitate the completion of the reports. Furthermore, the health boards have been informed in their 2003 letters of determination that, given the key role of the national intellectual disability database in planning and monitoring service provision, compliance with the timetable for the compilation and submission of data is vital. They have also been informed that there will be no extension of this timeframe in relation to the export of data to the Department and that they should take whatever measures are required to ensure that this deadline is met.
In April 2000, information from the national intellectual disability database indicated that in the period 2000-04, 1,711 new residential places and 912 new day places would be required to meet identified needs. In addition to the day places required to meet the needs of those awaiting placement, the extra funding also provided for those requiring a change in day care services. These include young people leaving school and requiring rehabilitative training places or those moving from rehabilitative training to sheltered occupational services, activation or services for older people. Initial indications from the 2001 data reveal that while the impact of the 2000 development programme is reflected in the data, a significant number of persons still seek residential services in particular.
Deputies have asked why waiting lists continued to grow given the level of investment made in these services in recent years. Significant revenue investment amounting to €188 million has been made since 1997 and is built into the ongoing budget base. Additional funding of €13.3 million has been allocated to services for persons with an intellectual disability or autism in 2003 to meet the full year cost of the 2002 developments and to further enhance the health related support services to children with an intellectual disability or autism. One of the primary factors relates to the demographic profile of this population group which is contributing to growing waiting lists for residential services even though the number of people receiving full-time residential services continues to increase. The increased birth rate in the 1960s and 1970s has resulted in large numbers of adults in their late 20s and early 30s requiring full-time residential services now. People with an intellectual disability are living longer than previously and are using services for several more years than did previous generations. The research literature indicates that the increased longevity in this population is primarily attributed to improved health and well-being, the control of infectious diseases, the move to community living, improved nutrition and the quality of the health services. The changing age structure among those with moderate, severe or profound intellectual disability has had and will continue to have major implications for services in the years ahead.
This has also been the international experience in service provision to this segment of the population. It would be foolhardy to believe that addressing this identified need will solve all our problems. Recent experience in the United States has shown that while residential capacity increased by 27% between 1987 and 1996, the number of persons requesting services increased by 38%.
A review of the waiting lists between 1997 and 1999, conducted by the Health Research Board and published in the 1999 annual report from the national intellectual disability database, showed that while 269 people from the original waiting list of 1,439 had received full-time residential services in the period, the waiting list had grown by an additional 238 places. This would indicate that an extra 507 people had joined the waiting list in the period.
While there are factors which cannot be controlled and which add to the challenge of responding to waiting lists, there are a number of things which can be done. For example, having data of good quality helps to inform decision-making and assists in developing plans to deal effectively with waiting lists.
In conjunction with the Health Research Board, health boards and the voluntary sector, the Department of Health and Children is currently implementing a national physical and sensory disability database which will provide a picture of the specialised health and personal social service needs of people with a physical or sensory disability within a five-year period.
With the availability of information from both databases to facilitate planning and monitoring of services delivery, the Government can pursue its proven commitment to the ongoing development of these services. It is my intention to work with officials from my Department and the various service providers, both statutory and voluntary, to get a more comprehensive picture of the overall health expenditure in the whole area of disability. This will enable my Department to determine the effectiveness of current expenditure and identify measures which might increase effectiveness and the relevance of services to people with disabilities and the implications for future funding. I also intend, with the help of my officials, to draw up a blueprint or benchmarking process where we can analyse what is best practice in Europe and see how other European countries look after their people with disabilities.
The Disability Bill 2001 included important new measures for people with disabilities in relation to the introduction of a new assessment of need system for health and related personal services for people with disabilities. Last year, my Department worked in close co-operation with the Department of Justice, Equality and Law Reform and it will continue to co-operate closely in bringing forward an amended Disability Bill later this year, as the Government has committed itself to do.
The Disability Bill was published in December 2001. The initial welcome for the Bill, described the following day by the editor of The Irish Times as a “milestone in Irish social history”—
That is because they had not seen the contents of the Bill.
—gave way seven weeks later to a vocal campaign against the Bill. The Bill enjoyed priority status during 2002 and will continue to do so in 2003. The Government recognised the need to engage in further consultations on the Bill following from a vocal campaign opposing this legislation. That is why a decision was taken to initiate the wide-ranging consultation process which is currently ongoing.
In April 2002, my colleague, the then Minister for Justice, Equality and Law Reform, Deputy O'Donoghue, appointed the five members of the consultation team. These included an Assistant Secretary General from the Department of Justice, Equality and Law Reform, a person with a disability, and experts in the social, economic and legal fields. The consultation team has been sitting since May 2002 and has met a number of key stakeholders, including the disability legislation consultation group, DLCG, the social partners, members of the community and voluntary pillar and officials from relevant Departments, including my own.
The DLCG is a representative group of disability organisations brought together by the National Disability Authority to facilitate the process of dialogue within the sector and with the consultation team. While the timeframe for the consultation process has in large measure been dictated by the timeframe set by the DLCG and the consensus-building process within that group, I understand that the DLCG is expected to present its proposals for disability legislation to the expert consultation team in the near future. Officials from my Department will continue to liaise with their counterparts in the Department of Justice, Equality and Law Reform over the coming months to provide any assistance necessary in finalising proposals for the new Disability Bill.
The Government remains committed to disability equality. An Agreed Programme for Government of June 2002 includes a clear commitment to the enactment of an amended Disability Bill in 2003. The post-Programme for Prosperity and Fairness agreement, which is currently under consideration by the social partners and the community and voluntary pillar representatives, reasserts this commitment, promising publication of the Bill in the autumn and its enactment by the end of 2003.
Deputy Rabbitte and others are being disingenuous when they refer to the "long delayed" Disability Bill.
Very long delayed.
The Minister will not provide the money. That is the issue and it has always been the issue.
An Leas-Cheann Comhairle:
The Minister of State, without interruption.
They will know that legislation, particularly complex social legislation such as the Disability Bill, takes time. The progress of the Disability Bill during 2001 was spectacularly fast compared to the normal pace of legislation.
Rubbish.
In this context, I remind Opposition Deputies that the equality legislation promised by them during the 1992-97 period was delivered by the Government in 1998 and 2000. The Minister for Justice, Equality and Law Reform, Deputy McDowell, and the Minister of State, Deputy O'Dea, are committed to bringing an amended Disability Bill through to enactment by the end of this year. I wish them well and will support them in their endeavours.
While it is recognised that there has been significant investment in disability services in recent years, the overall economic position in 2003 has had implications for all aspects of public investment. This is reflected in the Estimates and the budget adopted by the Government for 2003.
The Minister has a €5 million surplus. Why does he not use some of it in this area?
He should put his money where his mouth is.
Exactly. It is all waffle.
Within this overall framework, however, two thirds of the additional funding available for non-capital investment in services has been allocated to the health services. This funding is being applied largely to maintain existing levels of service across all service programmes, including services for people with disabilities.
There are no places for them.
While it is regrettable that the level of investment in these services achieved in recent years could not be maintained in 2003—
—my Department will work closely with the health boards and other service providers in terms of service provision this year.
How can they provide a service without money?
The Minister of State sold out. He is the Minister of State.
It is acknowledged that further work is required in the coming year to advance services. Only through the active participation of all involved can this issue be progressed to achieve what is ultimately most important, the delivery—
Money is most important.
Did I interrupt the Deputies?
An Leas-Cheann Comhairle:
Order, please. The Minister of State, without interruption.
I was talking sense. The Minister of State is giving us the same old waffle.
He should start behaving like a Minister.
An Leas-Cheann Comhairle:
The Deputies will have a right of reply.
The Government has provided evidence of its commitment in this area. It is also committed to moving forward to enhance the level of support available to people with disabilities and others who require specific supports. However, this can only be achieved in a sustainable and enduring manner if it is delivered within a financial environment that protects the delivery of services into the future.
There will be no extra funding.
Opposition Members castigated the Government. One Member asked me not to quote figures. I now understand the reason, given that there was a terrible paucity of investment when they were in government.
The Minister of State is going back a long time.
Of course I am.
That is ancient history. There are people with disabilities who have not received money in 20 years.
This is the first Government in the history of the State to appoint a Minister of State with responsibility for disabilities and mental health. We will be in government for five years and judged on our record, as the previous Government was on its record.
It will be five years of misery for people with disabilities.
The Minister of State sold out.
Government Members should be ashamed of themselves.
An Leas-Cheann Comhairle:
Order, please.
The people judged the previous Government and re-elected it.
On false promises.
They are sorry now.
Opposition Members love to believe that.
They will wait in the long grass.
The previous Government increased health funding from €3 billion to €8.9 billion, a significant increase. It is important that we reflect on this and the Government's commitment. There is also a significant increase in health spending for 2003. It is important that we should reflect on the outcomes of that spending. This is the European Year of the Disabled. We should focus and debate issues relating to disability.
Will funding be provided?
That is the reason European Year of the Disabled was announced.
The Minister of State lost the battle at the Cabinet table.
The Government will be judged on what it has done over its five years in power. We will maintain the fantastic progress made in terms of funding for people with disabilities. I would be delighted if Opposition Members compared what they did when they were in power with our record when they make their contributions.
The Minister of State was not even a Member.
I would love to hear the analysis.
Could the Minister of State not find €35 million in his budget?
I welcome the opportunity to contribute to the debate. It is like Groundhog Day as we talk about the same old issues such as waiting lists for services for the disabled. I was amazed at the Minister of State's audacity when he stated he hoped to continue treating people with disabilities in the same way he has done this year.
It is the same as the past five years.
The only difference this year is the extent of the crisis was obvious in January. The Government, in theory, allocated €13.3 million in additional funding to the handicapped sector but when that figure is broken down, at least half the money was needed to pay for last year's services. My health authority, the Eastern Regional Health Authority, was allocated €4 million, of which €2.7 million was needed to pay for last year's services. We began the year with less money than last year, which meant a cutback in services.
Two weeks ago the parents of carers and the disabled were protesting outside the Mansion House. I agree with my colleague's comments regarding the Taoiseach who belittled himself when he reduced the parents' campaign to a numbers game. All that mattered to him was that there were more people inside than outside and once he was on the winning side it did not matter. It demonstrated how little grasp he had of the reason the parents were there and the effort they had to make to get there in the rain. He disgraced himself.
The parents were protesting because of the cutbacks in services, which will mean that there will be no additional residential, day care or respite care places this year. Inevitably, parents of people with disabilities will die and residential places will still be required when carers give up. Some will get sick or die and not be able to continue caring. This means that those being cared for must be admitted to institutions or, if they are lucky, they will get a respite care place. That is what happening in every health board area. My colleague referred to a 102 year old woman living on the northside of Dublin who looked after her 70 year old son. She finally gave up the ghost and her son had to be admitted to an institution. These are real, live cases.
What does the lack of provision mean for the families who thought they might be lucky this year and be allocated a residential place? They will not even have a respite place for a weekend. There were no places left at the end of January. What will the position be at the end of the year? This is the reason we are in the House year in, year out discussing a crisis in the provision of services for the disabled.
I refer to the lack of day care places. No additional places will be provided this year for children with disabilities who need educational facilities. Last week 10,000 able bodied students were outside the gates of Leinster House complaining because third level fees may be reintroduced. Imagine what it would be like if they were told there would be no university or training places and to go home because they were on the scrapheap at 18 years of age. That would be a prison sentence for them and their parents for the rest of their lives. That is what the Minister of State is saying to people with disabilities. They are fair game to the Government which will say that to them but would not dare to do so to the students protesting outside last week. That is the reason a rights based Bill is needed for people with disabilities.
Waiting lists do not describe the human misery that is the result of what the Minister of State defends as provision for the handicapped. We go away at weekends and go on our holidays. In some cases, we go on two or three holidays. Those who care for people with disabilities do not go on holidays. Year in, year out they face the same hard work and commitment. We abuse them because we know they will go on sacrificing and caring until they die. While we go away for weekends and holidays, they will change nappies, liquidise food, tend bed sores and cope with the most appalling behavioural difficulties, yet we betray them by not providing even the most basic facilities.
We spoke today about Drumcar and its facilities. I used words I should not have used because they would imply that I was criticising those who are providing care in Drumcar, to which I referred as a "dumping ground". What I meant was that it was being treated as a dumping ground and it was unfair to ask anybody to care for disabled people from all over the country without the necessary resources. I was wrong to do that.
The stories emerging about our treatment of the disabled at the beginning of the 21st century are not a lot different and certainly not much better than they would have been at the beginning of the 20th century. Those stories would have shocked us even if they related to the era in which Charles Dickens lived. The problem is that we have become so inured to what is going on in the health service, and to the failure of that service, that we are no longer shocked. We think it is almost acceptable that a woman of 102 cannot even die in peace knowing that her son will be looked after. When that no longer shocks us and when we find it acceptable, we cannot call ourselves a civilised society.
The Minister of State earlier indicated how much money is being spent on the disabled and the handicapped. He said that we had to have our priorities right and that our priority now must be the economy. He said that when the economy stabilised the disabled would be looked after. The Minister of State is wrong. He and I can wait for the economy come right. If we were in any way civilised and if we had any conception of what we were doing to the disabled and families, they would be the very last people of whom we would request sacrifices.
The Minister of State is correct, we must prioritise when times are hard. With between €20 million or €30 million, we can turn what is a catastrophe into just yet another crisis for the disabled. I ask the Minister of State to find the money and not allow another year or another week go by without finding that money somewhere in the health service. Surely that amount of money can be spared from the overall budget of €8 billion.
I welcome the opportunity to contribute to the debate and I congratulate the Labour Party and Deputy Moynihan-Cronin for bringing this motion before the House. The Minister of State spoke for more than 30 minutes and outlined the action taken by the previous Government. We want to know what this Government, which came into office last June, intends to do. This debate is not about history; it is about what will happen this year. It is about what will happen the 1,711 people living at home who require full-time residential care. We want to know what will happen the 861 people who require a day service. What proposals does the Minister of State have to deal with the 1,014 who require respite service? There is no money provided to do anything, but these people have real needs and they require services to be provided by the Government.
When I asked the Minister of State about this matter tonight, he accepted that it was necessary to provide services but obviously that requires funds. The Government's priority is to get the economy on track and the Minister of State said it will provide the same amount of money, if not more, in the coming years when and if the economy comes on track. They did not say that to the unions during the negotiations held in recent months. They rightly negotiated their position and obtained benefits, however limited, and funding. The Minister of State is unable to provide any funding to the disabled.
I received a letter dated 7 February from the leader of the Minister of State's party, the Tánaiste, Deputy Harney, in which she stated that both parties in Government are strongly committed to supporting the health services. It said that "Despite the difficult fiscal situation facing us in compiling spending Estimates for 2003, it was agreed nonetheless to provide for a very substantial increase of €523 million in the allocation for health." That is a further increase in allocation but not a penny to the disabled. She further said: "It is up to the Minister for Health and Children, Mr. Micheál Martin, TD to decide how the increased allocation is to be applied within the area of his responsibility." The Mini ster decided not to give anything to those with disabilities.
I have known the Minister of State for 20 years and I know he is a decent man. He has been hung out to dry, however, and he has not been given a bob. He has not been treated fairly by his senior Minister.
The Deputy is judging me very hard.
The people who are suffering are those with disabilities, who are in distress, and the parents who care for them. About 30 or 40 emergencies will arise each year when a parent is not able to continue caring, usually when they die.
The Minister of State informed me that €113 million will be given this year to help those with intellectual disabilities and autism, but he also said that sum is to pay for the services for last year. That has nothing to do with 2003 and it is no answer to give to somebody asking what will happen the 30 or 40 people who will become emergency cases this year. The Minister of State said that he is confident that problems could be resolved, but that the overall funding must be examined and that is the priority.
If a parent dies and there is nobody to take care of a young child, a young adult or a middle-aged or elderly adult, the priority should be to take care of them and the funding should be available. In such circumstances the overall funding should not be the priority. There has been a reduction in funding this year. People who represent those with disabilities are extremely concerned that families will be asked to take their loved ones home because of a cut which will mean less people in the service. That is common sense.
We spoke about the accommodation of those with intellectual disability in mental hospitals and the matter has also been raised on the Adjournment. For many years the Inspector of Mental Hospitals has been saying that those with intellectual disability should not be in psychiatric hospitals. It is unfair on people with intellectual disability to be in psychiatric hospitals and it is unfair to those suffering from psychiatric illness to be in those circumstances. The Minister of State should not boast about there being only 452 people in psychiatric hospitals because there should not be anyone in such hospitals.
I wish to pay a special tribute to the staff in the service. The Minister of State has been involved in the provision of health care; he is aware of the problems and knows that what I am saying is true. I ask him to obtain the €35 million funding. I accept that it is glib to say so, but a jet for the Government costs €100 million. A sum of €35 million is required to overcome the difficulties in the area under discussion. We are not talking about the €93 million surplus that magically arrived at the close of the last financial year. I implore the Deputies on the other side of the House to vote for the allocation of €35 million to solve the problem.
I welcome the opportunity to debate this issue tonight and commend Deputy Moynihan-Cronin for raising it. The Minister of State said that the Government will be judged on its record. How will the Minister of State be judged at the end of this year, the European Year of People with Disabilities and the year that the Special Olympics come to Ireland, the first time they have been held outside the United States? Will he be able to hold his head up at the end of the year in regard to the services he has provided in 2003?
There are more than 3,500 people waiting for residential, respite and day care places and not one place has been provided for in this year's budget although the Department of Health and Children has received a massive increase in investment this year. The Minister of State has lost out in regard to the dividing of that funding. We want a paltry €35 million. For the past five years we have heard ad nauseam from the Government about the boom and the Celtic tiger, yet at the same time parents were crying out for services for people with disabilities. The resources required have not been provided.
People with disabilities who have been dumped in psychiatric hospitals have been ignored by the Government. When we had a booming economy they were ignored and were inappropriately placed in psychiatric hospitals. Every year the Inspector of Mental Hospitals has maintained that not one of them should be retained in a psychiatric hospital. This is the greatest single abuse of human rights in the developed world and it will come home to roost. The Minister of State talked about going around visiting facilities. I ask him to visit them and to try to defend what he has stated in the House tonight. He cannot defend it.
Over the past couple of years the Minister for Finance increased the budget for respite grants. There is not much point in providing the money for respite grants if there are no places available for the provision of respite. There will be no additional place this year for the provision of respite. Parents who were given a commitment by service providers that they would get respite this year have now been told that there is no provision available. Many of these people have been on waiting lists for years just to get a short weekend break every now and again, yet the resources have not been provided and the funding is not there.
The Minister of State spoke about the disability database. Every September children who have left the education system at 18 years of age are abandoned because the intellectual disability database is not there. The health boards are left to pick up the pieces without resources. The ser vice providers cannot pick up the pieces because they do not have the facilities. Every September Members are contacted by people because there is no provision for a place for their sons or daughters. The same will happen again this September, and the Minister of State's answer is to blame economic circumstances.
The overall economic position in 2003 has implications for all aspects of public investment, including the disability service. Why have disability services been cut back? The reason is they are the soft option. They are the voiceless element of our society and can be ignored so that the Government can go on and invest in other places.
Where has the money gone? The Government says that it had money in the bank at the end of the year and is investing that money in buying a Government jet. We are looking for €35 million to put into intellectual disability services. We have a national pension reserve fund into which the Minister for Finance put a large amount of money at the end of the year to support employment in the EU, the US and Japan. Why could some of that not have been used through public private partnership to invest in the disability sector? The sector is being ignored because of a lack of ingenuity on the part of the Government. If it does not have money to put into capital investment in the sector it should use the national pension reserve fund.
The only response the Government has given in regard to elderly parents living in fear of what will happen to their sons or daughters if they die is that there is no space in the inn.
Debate adjourned.