Services for People with Disabilities: Motion

Senator Mary Ann O’Brien

I move:

That Seanad Éireann:

recognises the need to protect and maintain disability supports and services in order to enhance the participation and inclusion of people with disabilities in Ireland;

recognises the need to protect those with a disability in our society, ensuring that people with a disability can continue to lead a fruitful and active life, despite essential cutbacks required in the current economic climate;

calls for the immediate publication of the value for money and policy review of disability services;

acknowledges that €1.5 billion is spent on disability services, yet people using these services have no say over the services they receive, where they receive them or who provides them [Department of Health (2011)] and notes the need for a move towards international best practice involving individualised funding to give people with a disability and their families greater control over the services they receive from the State or the manner in which disability allowances are used;

expresses our regret that the labour activation measure announced by the Department of Social Protection to date prevents people in receipt of disability allowance availing of the programmes, despite research showing that two thirds of people with disabilities were willing to work with the correct supports [ESRI and OSI (2011)];

calls for the Government to immediately commit to bringing a legal capacity Bill before the Oireachtas to repeal and replace the Lunacy (Regulations) Act 1871, which takes away decision-making rights from people with an intellectual disability and results in Ireland being decades behind Europe and North America in the area of capacity legislation;

calls on the Government to outline its plans to put the national standards for residential services for people with disabilities on a statutory footing and ensure that services are inspected by the Health Information and Quality Authority [Programme for Government 2011-2016] given that there are over 8,000 adults and over 400 children with an intellectual disability in full-time residential care paid for by the State, but which are not inspected by any Government agency [National Intellectual Database HRB (2011)]; and

proposes that the Government under the stewardship of the Minister for Social Protection acts to develop effective and appropriate legislative and policy responses, across all relevant Departments and agencies, to create a structure, including a welfare system, which recognises the individual needs and circumstances of people with disabilities.

I am sure all 59 other Senators would agree wholeheartedly with the title of the motion and would aspire that it be reflective of Ireland in the not so distant future. However, we are no different from any of the politicians who have gone before us. Every last one of them would have pledged something similar throughout their political careers. Therefore, one has got to ask why this shared application has not been recognised. It has not been from lack of will, time, effort and financial investment in the disability arena. To my mind, the answer lies within the motion document before us. I am sure Members will agree the motion covers a vast number of hugely expansive and highly complex issues pertaining to disability, although it is by no means a conclusive list.

Before I continue, to focus and centre our minds, I will repeat the first sentence of the motion, which seeks to recognise the need to protect and maintain disability supports and services in order to enhance the participation and inclusion of people with disabilities in Ireland. In my own plain language, I would like us to ensure that all 750,000 people who have disabilities in this country are treated like citizens.

My aim while formulating this motion was to be as far-reaching as possible and to expose issues which hamper the daily life of people with a disability and their families. Deputy Simon Harris encapsulated perfectly the problem which arises on the rare occasion that disability issues are discussed in the wider public domain in a recent opinion in the Sunday Independent. His article was entitled “Anger without action changes nothing for the disabled” and detailed the emotive debate which erupted following the changes that were going to be made to the payment of disability allowance to young people in December’s budget. This led to the eventual pausing of the measure. Deputy Harris’ central point, which I share, was that great outrage without reform never gives a great result. That is exactly what happened in December.

I am not a politician by nature or definition but I am someone who has worked to promote the rights and care for some of the most disabled children in the State through the Jack and Jill Children's Foundation. Therefore, it is my hope that this debate in the Seanad will be both informative and productive. I want it to be free from political point-scoring by all sides. I would use this evening in a small way to raise the topic of disability closer to the top of the political and public agenda given 18.5% of Ireland's total population is disabled, according to studies.

Given the broad nature and complexity of issues contained within the motion, it is my intention to deal briefly with each, outlining the current situation, identifying the problem and putting forward a possible solution. My colleague, Senator O'Donnell, will then deal with the outstanding matters during her contribution.

In order to bring about constructive reform to areas like disability services, it is imperative that the reforms introduced are as a result of research which is in the public domain to facilitate meaningful debate. Therefore, it puzzles me greatly why the Government has introduced reforms and plans further changes in the coming months in areas relating to disability without publication of a value for money and policy review of disability services, commissioned originally in 2008. It appears as if the Government is operating in a bubble — flying blind, so to speak. We are told we have to wait until at least April for publication, despite the public consultation phase closing in early November last year. Why is this the case? I would doubt that it will grab as many headlines as other pending reports. Perhaps the Minister of State present, Deputy Kathleen Lynch, will explain the delay and go as far as giving us a publication date.

Let me give the House one simple reason that this report must be fast-tracked, namely, every day it is not published, the State is spending thousands of euro ineffectively and certainly not to the best benefit of disabled people. Currently, almost 75% of all public moneys spent on disability go to service providers and not disabled people directly. Before I continue, as I will be saying some fairly harsh things about service providers, I will acknowledge, without naming anyone, that there are some magnificent service providers in this country. Let me get that on the table. Nonetheless, it is truly shocking that 75% of the €1.5 billion spent goes to services and not to disabled people. The waste of precious resources must be endless and the services being provided are far from perfect.

Take the case of the Tipperary family of which I spoke numerous times in this Chamber in the last session. They are likely to lose their home this year due to cutbacks while struggling to support their severely disabled five-year old boy. The HSE, in its wisdom, cannot find a paltry €300 a week to care for and support this child in its budget, leaving the Jack and Jill Children's Foundation to do the HSE's work for it.

Let me repeat it again for the Minister of State. The Jack and Jill model of care would save the State millions of euro per year if it were adopted as Government policy. The reason is that it is efficient and client-led. That is only one small example of many where the State is not getting value for money in the disability arena.

Last week a mother told me about her intellectually disabled 38 year old daughter who was offered a day care placement five years ago, provided and paid for by the State. The only problem was that the young lady in question did not want to go to the particular day care programme as she finds the subjects offered there completely boring. They did not meet any of her needs or interests. She has chosen to stay at home although the State has continued to pay the provider for her day care placement for the past five years. The idea of a model, or of client-focused services, does not appear to be a culture which the State agencies seem willing to embrace. Recently, a senior HSE official confirmed in writing that the HSE was not demand-led. Please allow that statement to sink in. The HSE is not demand-led.

It is this attitude that leaves Ireland lagging behind when it comes to the provision of individualised services for disabled people. If this country is to catch up with international best practice it is necessary for the Government to introduce a welfare system of individualised funding to give people with a disability and their families greater control of the services and allowances they receive from the State. Given that according to the Department of Health, some €1.5 billion is spent on this area, nonetheless people using services have no say over what services they receive, where they receive them or who provides them. Ultimately, disabled people are consumers like us all and they deserve the power of choice.

Individualised funding is a vision where the focus is on getting the person the right support to live the life he or she wants to live. I do not believe this vision is unrealistic. We should not stop until people with disabilities have the power of choice afforded to them. The current system provides no meaningful choice for people with a disability and their families. They are presented with a number of options — perhaps I should say boxes — which they must fit into and tick, with no appreciation of personal needs or individual circumstances.

Consider again the little boy from Tipperary, to whom I referred. The HSE will offer him a place in a day or weekend respite service which he is not well enough to attend. It refuses to offer him a home care package, in spite of medical evidence that shows he performs better in his home setting. Under an individualised funding, this would be radically different. The person would be placed at the centre of the plan. In addition, he or she and the family would be invited to help in the drawing up of any service in which he or she was expected to participate. In the case of this little boy, the family would be given the same level of funding by the HSE and would be tasked with sourcing the best service for their child that met his exact needs, thus allowing him to stay at home. Imagine the sense of relief this would provide for that family. Importantly, plans do not focus solely on what is already available. Person-centred planning is about creating a life for a person, not merely a plan and a service. It focuses on what could be provided and how to make it happen. Simply because something is not available does not mean it could not be provided in the future.

Recently, a person with a disability told me that a move towards individualised funding would allow those concerned to take control and provide a sense of freedom and excitement about their life, if they were to obtain the services that would allow them to participate fully in everything that interests them. The words were, "At present I have no real say in my life and I must do what is prescribed by someone in an office who does not understand my individual needs and interests." Nobody in this country should be made to feel like this.

The value for money and policy review of disability services in the public consultation phase seems to appreciate the need to adopt an individualised funding model. Tonight I would like to hear from the Minister of State what the Government's views are on such a model, given that in its report on disability, published in 2011, the World Health Organization cited individualised funding was the approach to adopt when it came to disability funding. Such a model has been introduced with great success in Northern Ireland, Britain, Canada and the United States, to name a few.

Participation and inclusiveness for all should be at the forefront of all Government policies and initiatives. It was to my dismay, therefore, that I discovered that anybody who is in receipt of disability allowance is excluded from participating in the much heralded JobBridge labour activation measure, in spite of research published by the ESRI and the Office of Social Inclusion, which shows that two thirds of those surveyed were willing to work, given the correct supports. I have yet to hear any Government representative satisfactorily explain the reason for this. To the best of my knowledge, the defence is that it is acknowledged that a person in receipt of disability allowance may not be able to work and that is why it was not deemed an eligible payment. It is certainly the case that some people receiving the allowance are unable to work. However, it is also the case that the Government accepts that some of those in receipt of the payment are able to work as the disability allowance scheme allows a person in its receipt to earn up to €120 per week before it impacts on their payment. There are a number of earning thresholds beyond that before a person becomes ineligible for the payment. As Senators can see, the current defence does not hold water. It borders on discrimination. Legally, the Government will probably escape sanction as it will find a loophole in the terms and conditions drawn up for JobBridge.

We are all familiar with the concept of poverty traps and why we should strive to prevent them. I wish to bring a piece of research by the Central Statistics Office to the attention of Senators. It shows that the number of people with disabilities living in consistent poverty has risen dramatically in recent years, from 8.8% in 2009 to 13% in 2010. There are endless examples to which I could have pointed today that show how people with disabilities are getting a raw deal. My colleague, Senator O'Donnell, will highlight the other issues contained in our motion.

There are 750,000 people in Ireland with a disability or a mental health need. Broken down, this amounts to 10.5% of adults and 8% of children. This means that as we get older we are more likely to become disabled. In other words, this is about protecting people from the cradle to the grave.

Senator Marie-Louise O’Donnell

I am very pleased to second the motion proposed by my colleague, Senator O'Brien. The motion recognises the need to protect and maintain disability services. We need to do this in order to enhance the participation and inclusion of people with disabilities in Ireland. I will speak in particular on two elements of the motion, the first being the Lunacy Regulation Act 1871. It is astounding that this Act remains the governing legislation in this area. The second element is the standard for residential services for people with disabilities.

The motion calls on the Government to commit to speedily and immediately bringing a Bill before the Oireachtas to repeal and replace the Lunacy Regulation Act. Many people may not be aware that this Act, long since outdated, still governs the adult wardship jurisdiction of the courts. The need for appropriate and modern legislation on mental capacity applies, not only to persons with intellectual disabilities but potentially also to other categories of people, including those with acquired brain injury, dementia, and so on. I am sorry to state that the approach of this Act to questions of capacity and disability is just as outdated as is its language.

International best practice is to access capacity on a case by case basis. This entails focusing on what is known as functional capacity, and assessing the person's capacity to understand the nature and consequences of a decision in the context of the choices available to him or her at a particular time. Supported and assisted decision making is now best practice internationally, where necessary and where appropriate. This is not the case in Ireland and we continue to operate primarily under the 1871 Act which provides only for general finding of incapacity, which then applies to every decision for the person in question and covers everything from decisions on living arrangements and property, capacity to enter into legal contracts and consent to medical treatment, etc. This approach is not appropriate in a modern setting. Our understanding of intellectual disability is no longer what it was in 1871 and it is time our legal framework caught up.

I am very pleased to see a reference in the programme for Government to reforming the law on mental capacity. However, as we approach the first anniversary of the Government's term of office, it is time to convert that commitment into immediate action. This is a very complex area but already there is considerable expertise available which could allow for speedy introduction of appropriate legislation. The 2006 report of the Law Reform Commission on vulnerable people and the law contains many valuable recommendations which centre on the need for a modern system for guardianship or wardship of adults. As a recently appointed Senator, I am conscious of the efforts made by Members in previous Seanads who twice sponsored Private Members' Bills on this topic. These should be drawn on to finally repeal and replace a 140-year old law which is outmoded and outdated in its language and content.

We have information that a large number of people, some of whom may be particularly vulnerable, are in full-time residential care paid for by the State but without any adequate or official inspection regime. This is not acceptable. We have been shocked at the abuses uncovered in the past in certain nursing homes, industrial schools and other residential settings. Residential care homes cater for 8,000 adults and over 400 children with intellectual disabilities. All these are well run institutions, staffed by hard-working, committed and caring professionals. The crucial point, however, is the only way to ensure this is to have clear and appropriate standards for such residential services with an inspection framework to ensure they are upheld. Outrage is useless after a difficulty or abuse is uncovered. The only mature approach is to put an appropriate legal framework and inspection in place before the problem develops.

The programme for Government, to be fair, states standards for residential services for people with disabilities will be put on a statutory footing and be inspected by HIQA, the Health Information and Quality Authority. It is time now to move on this. I would, however, have expected concrete information on the fulfilment of this commitment at this stage. What is the timeframe envisaged for the enactment of any legislation? When can we hope inspections will begin?

These are fundamental and profound human issues. As an aunt of a disabled young man, I know this points to the very heart of who we are, as well as who we think we are, as they affect the vulnerable and persons with disabilities. The issues raised in this motion are not affected by budgetary concerns or the ever present term "the current economic climate". The need for repeal and replacement of the Lunacy (Regulation) (Ireland) Act 1871, of which I have spoken, is a perfect example of a practical measure which could do much to enhance the inclusion and participation in society for people with disabilities without any budgetary implications. It is a simple question of demonstrating that we, as Senators and legislators, believe in the inherent value and dignity of all people, whether they have a disability. I urge all Members to support the motion.

Senator Martin Conway

I move amendment No. 1:

To delete all words after ‘‘That'' and substitute the following:

Seanad Éireann, considering the need to take account of the current budgetary and fiscal situation facing the State, recognises this Government's commitments to people with a disability in the programme for Government including:

developing, in partnership with the disability sector, a national disability strategy implementation plan;

reforming the delivery of public services;

greater participation by people with a disability in employment, training and education in accordance with a revitalised national disability strategy;

a value for money and policy review of disability services;

a move to personalised budgets as part of this review;

implementing national standards for people with a disability living in residential services; and

a reform of the law on mental capacity.

Notes that the Health Service Executive national service plan for 2012 has been drawn up against the backdrop of significant funding challenges and that while the allocation for specialist disability services will reduce by 3.7% nationally, in 2012 the level of service reduction will be less than the level of budget reduction as a result of the efficiencies that will be delivered;

recognises that some reductions in disability services will be unavoidable and welcomes the aim of the HSE to tailor such reductions in a way which minimises the impact on service users and their families as much as possible;

welcomes the provision of €1 million for autism services in 2012 to address waiting times for specialist therapy services for children and the further development of early intervention teams for children with disabilities including autism;

welcomes the Government's intention to publish the value for money and policy review of disability services in the first half of this year,

welcomes the Government's commitment to regulate residential services for people with disabilities;

welcomes the disability policy review which was recently published by the Department of Health for public consultation and which includes proposals to move to individualised funding for disability services to provide greater choice and control to people with a disability;

welcomes the establishment of the national disability strategy implementation group;

welcomes the Government's commitment to publish the mental capacity Bill in the current session of the Oireachtas; and

acknowledges the significant measures the Department of Social Protection has in place to meet the employment-progression needs of people with disabilities.

I welcome the Minister of State, Deputy Kathleen Lynch, back to the House. She is a frequent visitor at this stage. I commend the Independent Senators for tabling this Private Members' motion. To a certain extent, they stole my thunder because my amendment is similar to the motion. I had proposed Fine Gael would use its Private Members' time next week to table a similar motion. I am delighted the Independent group has tabled it a week earlier.

I acknowledge the remarkable work done by Senator Mary Ann O'Brien through the Jack and Jill Children's Foundation. It is doing the work the Government should have done for many years.

The annual spend on disability services now comes to €1.5 billion. While this is an enormous resource, it has been poorly spent in the past. The Government has not yet been in office for a year — the anniversary is approaching — and already the value for money audit on disability services is at an advanced stage. Will the Minister of State give us an indication as to when we can expect its publication? Some actions have been taken to deal with some of the issues that arose during this audit.

The largest problem with disability services is that there has been a proliferation of organisations working and advocating on behalf of people with disabilities. Unfortunately, the massive resources made available in recent years have not got to the end-users to the degree we would have liked. We need fundamental change in this regard.

Personalised budgeting for people with disabilities is a fundamental care plan which has worked elsewhere in Europe where introduced. The Government intends to take this direction. Unfortunately, it would have been useful if this had been introduced during the good days when massive resources were available. That said, I must pay tribute to the former Minister of State with responsibility for disability issues, John Moloney, who recognised money was wasted and instigated the value for money process which has been taken over by the Minister of State, Deputy Kathleen Lynch. We are fortunate to have someone of her calibre heading up this sector. She will take it inch by inch, row by row to ensure the money spent goes to the end-user.

Publication of the mental capacity Bill is imminent. The Minister of State will probably update the House on its progress later. This necessary and urgent legislation is long overdue and should have been introduced years ago. While no further delay in its publication is acceptable, it is important we get it right.

Over the weekend I attended a conference in Vienna on the implementation of the UN Convention on the Rights of Persons with Disabilities. It was fascinating to hear the difficulties experienced in some European countries in providing disability services along with examples of best practice in others. While we have a long way to go to improving our provision of disability services, other countries experience similar problems. Belgium has very good support structures for people with disabilities. Up to 500,000 people there, however, are on waiting lists for personal assistance services.

I believe in integrated education. The best way of fostering equality and opportunity is to have people with special needs attend school in a mainstream environment. It is interesting to note that in Italy, 99.5% of people with special needs are in integrated education because the laws are in place to ensure it. I would love if we could achieve the same. We need to observe international best practices and implement them here.

Ireland is a caring and charitable nation. However, charity and caring is not what people with disabilities require. They need their rights recognised in legislation and through care packages such as personalised budgeting. The programme for Government is committed to ensuring the lives of people with disabilities will improve and moneys for disability services will be spent wisely. Adequate resources are provided but, unfortunately, their spending is not channelled correctly. Instead, it is broken up all over the sector. I have tried to get a handle on the amounts spent by various Departments but have only come up against brick walls. This is why the value for money audit is critical. That is why within a year of being in government, we have set a foundation. What we need to do now is build on it and I have no doubt we will do that. I am happy to propose the amendment because it reflects much of what is contained in the motion.

Senator Marc MacSharry

I welcome the Minister of State to the House. I thank the Independent group for using Private Members' time to discuss this important issue. I apologise for the absence of a number of my colleagues but there is an important funeral in Cork today. There are not as many of us around for the debate but I would not like anybody to think that undermines the importance that our party attaches to this vital issue.

Like Senator Mary Ann O'Brien, I am not interested in scoring political points on this subject. Reference was made to the contribution of former Minister of State, John Moloney, in the past and we would all like to get this issue right. Everybody acknowledges there are difficulties and while there are many reasons for failure, there are no excuses. That is why we must have an open mind in considering the best way to move the debate forward. I will not list the measures Fianna Fáil implemented correctly over the years or what the Government has begun to do badly. I fully support the concept of individualisation. We must look to what might have been perceived once upon a time as non-essential charities and voluntary organisations run by business people such as the Jack and Jill Children's Foundation and examine the care model they have implemented in such a professional manner. We must be prepared to learn from this.

State institutions are often cumbersome and reluctant to accept the need for change. Departments are like walls filled with pigeon holes similar to those via which our post is distributed and civil servants are unable to connect one pigeon hole to another. That often contributes to preventing something that is simple and necessary from happening. In 2007, Ireland signed up to the UN Convention on the Rights of Persons with Disabilities. This did not confer new rights; rather it reiterated existing rights and made it clear that such rights could no longer be ignored. The heads of a mental capacity Bill were drawn up in 2008 based on a Law Reform Commission document on vulnerable adults produced in 2006 and, therefore, from the outset the scheme of the Bill was outdated, as it was based on this document and not on the UN convention to which Ireland had signed up.

I have been contacted by a number of interest groups and, as they have said, since it is 140 years since primary legislation was introduced in this area, we should be sure we get the update right. Ireland's long-standing position on conventions such as this is that we ratify them after we have legislated and, therefore, to ratify this convention, legislation needs to pass through the Oireachtas. However, there is little point in ushering in legislation that does not allow for ratification, as the proposed Bill threatened to do. Legislation must adhere to the changes the convention sets out. This would mean a move way from the stigmatisation associated with mental health issues. We recently debated the incidence of suicide and mental health issues and the Minister of State has been very good to come to the House so often. She is fast becoming the Martin Mansergh of this Administration. For a period, he felt like he had never left the Seanad, even though he was a Minister of State.

Deputy Kathleen Lynch

I hope I do not meet the same end.

Senator Marc MacSharry

During the debate on suicide, I highlighted an aspect of a Millward Brown poll of Deputies, which showed that more than 50% of them felt that anybody with a mental health issue should not have children. I am sure if Senators were polled the outcome would not be as bad. Other research confirms that Oireachtas Members and society generally have similar views of people with disabilities, which highlights the scale of the challenge we face.

Those of us who have businesses should think deeply about interviewing job applicants and what our attitude would have been to a person with a permanent disability. I am not sure how honest we are with ourselves if we think about this privately among ourselves. People who do not have a disability need to be educated. To give a lead to the private sector, when young people with disabilities leave college, the public sector should guarantee them an internship immediately in the field in which they are qualified to gain valuable experience, which would give them assistance in securing private sector employment. This proposal should be examined.

I agree with individual funding. Disability organisations need money to fund jobs, offices, marketing and advertising. People with disabilities are seen as cash cows by some organisations. I do not say that their intentions are not good but they are swallowing up significant resources unnecessarily. Fianna Fáil supports the motion, as we are all focused on trying to make improvements and a positive contribution in this area.

Senator Mary Moran

I also welcome the Minister of State to the House. She has been a great source of information and she is always been approachable when we have questions. I highly commend the motion and Government Members are in difficult position, given an amendment has been tabled, but there is not much difference between them. The bottom line is we all want to do away with the stigma associated with disability services and all want to improve them.

The lunacy Bill that was published was atrocious and I speak as the mother of a 14 and a half year old boy with a moderate intellectual disability. My hackles are immediately raised if anybody brings up that word. I have been out with my son and people have asked me his age. I tell them to ask him. To put it in Dundalk language, he is a wee dote, as are all children. A total of 18.5% of the population has a physical or intellectual disability and we must look after them. I acknowledge the presence of Ms Deirdre Carroll from Inclusion Ireland and others from Amnesty International who are in the Visitors' Gallery and I thank them for coming to the House. I was fortunate to receive a nomination from Inclusion Ireland to run for the Seanad, which is probably why I am so nervous today. We have to get it right. I am not worried about that, however, because I know the Minister of State is the right woman for the job.

The quicker we can complete the value for money review, the quicker we can act. We have to ensure funding goes to the people with disabilities who need the money. As a parent and having been involved with various disability groups in my own area of County Louth, more than anything I want people to be given a choice. I do not want my son to be put somewhere unsuitable when he finishes school at the age of 18. I want him to be able to do something constructive. Yesterday, I visited the cúltaca project group, which is part of the Netwell Centre in Dundalk. The group supports assisted living with high powered technology, which gives people a sense of independence. Yesterday, The Irish Times included a copy of the excellent magazine, Insight, which reiterated what each of us have said in regard to disability.

Individual budgets that allow services to be tailored to people's needs and a specific minder to be designated are the way we should proceed. One of the biggest challenges I faced when my son turned three was accessing information. I had to continue with my life and work. I often felt that I could cope with disability and whatever else is thrown at me but I needed to access services. A significant amount of money is wasted by service providers because the money is not invested where it is needed.

It is vital that inspections are carried out. We have seen the reports. My son uses respite services and I would be lost without them. I have other children who are taking examinations. Inspections are necessary because children do not always understand the problems that arise or else they cannot communicate or report them. I know the Minister of State is working on this matter.

We must not forget that every person with a disability is unique. We need to tailor services to individuals' needs. I acknowledge Inclusion Ireland has been working on this for the past ten years. We must also work with HIQA on individual inspection reports and the quicker we implement them, the better.

Senator Feargal Quinn

I wish to share time with Senator Norris.

An Cathaoirleach

Is that agreed? Agreed.

Senator Feargal Quinn

I do not know why the Opposition amendment was tabled. There is no need for an amendment to this motion, which Senator Mary Ann O'Brien drafted so effectively. It stands on its own and it should be supported. In the 19 years I have been a Member of this House, I have invariably found that Governments felt they had to introduce amendments which start with "delete all words after". There is hope but hope is often in our own hands. We must recognise that individuals who are sometimes cast aside because of disability also have considerable ability if we help them find it.

My company had a policy of employing a number of people who would otherwise not have been employed. It was a joy to see such individuals suddenly succeed. The mother of one young man who was employed to wheel trolleys from the car park approached us to argue that he was capable of doing far more than that. For two years he did nothing but wheel trolleys but he blossomed and grew once he had colleagues who were prepared to help him. His colleagues also blossomed and grew because they saw somebody who was given a task — I think it was the fruit and vegetable department — which he was suddenly able to perform. We can do far more if we trust people.

For the past five years I have been patron of the Irish Association of Supported Employment, in which regard I saw the same thing. We have to spell out to employers that they can do more if they have confidence in people. On one occasion when we were opening a new supermarket, a young woman with one arm was among those who applied for a job. She had a lovely personality and the store manager suggested that she could work at the check out because, whereas in the old days staff had to handle the goods with their left hand and ring up the prices on the cash register with the other, only one hand is needed since the advent of scanning. We employed her and she was so successful that she stayed with us for at least two years before getting a job in a local flower shop which she now manages. It is possible for us to do things but we must have confidence.

Between one in five and one in six people have long-term disabilities, most of which are acquired through the life course rather than present from birth. Many of these individuals have major difficulties performing everyday activities according to the report, Social Portrait of People with Disabilities in Ireland, which was published last year. We can do far more.

The motion deserves our attention. The United Nations Convention on the Rights of Persons with Disabilities aims to shift society's treatment of people with disabilities from a charitable perspective to being based on rights and inclusion. We need to sent that message not only to the Government but also to the entire nation.

Senator David Norris

I commend Senators Mary Ann O'Brien and O'Donnell for their passionate advocacy of one of the most important issues facing this country. It is notable that they were among the imaginative nominations by the Taoiseach but they have the courage to speak out independently. Nothing could offer greater justification for the continuation of this Seanad in whatever form it may take.

I was moved by the story of the boy in Tipperary, although I have heard it previously. It is a disgrace that his parents lost their home, particularly given that we approach the 100th anniversary of 1916. I will not rehearse those phrases.

People with disabilities have every right to be angry. I have also worked with Inclusion Ireland, which I salute as a remarkable organisation. I was horrified to learn that the Lunacy Act is still in force. I ask the Minister of State to give her commitment that she will remove that Act from the Statute Book. Such language is offensive to these people. I recall a period when we were going through legislation to remove that kind of language. Let us make a commitment on this tonight if we do nothing else.

I regret there are two amendments. I do not know why they were tabled because it should be obvious that the motion is justified. People with disabilities want the equality which the foundation documents of this republic promised. They do not want reliance on charity. They want what they are entitled to, which is the opportunity to live independently. The Minister promised a mental capacity Bill. I would like to know where it is, how it is going, when we will get it, and whether it will be introduced through this House. We have people here who have demonstrated they are absolutely qualified to deal with it. It is wonderful that people such as Senator O'Brien and her husband, in the Jack and Jill Children's Foundation, have done this remarkable work. They should not have to do it. They were placed in that situation, but they have done it.

I remember, when some of the earlier legislation was being discussed, my then colleague Senator Joe O'Toole and I fought against another Government to achieve rights-based legislation, but we could not. Even in those good days, the justification was the economy. If we wait for the economy to be right, we will never do it. One of the proudest and most positive moments of my life was being asked to present an award at the O2 Ability Awards — not disability awards. So many employers spoke there about how wonderful their employees who were disabled in one way or another were because of their immense commitment to the job. That is what makes it so mean and so awful that they are excluded from this job access programme. They should be encouraged rather than stymied, because it is good for their mental welfare, it is good for the education of the people who work with them, and it is good for business. Businesses are run by pretty hard-headed people. Senator Quinn was one of the major supporters and he received an award that night. He is a decent man but a hard-headed businessman. People like that would not employ people with disabilities if they did not get damned good value out of them, and we in Seanad Éireann must assist in every way we possibly can.

I listened in horror to a story on the radio in the last couple of days. A young woman who had a progressive illness that resulted in disability had lost her medical card through a kind of computer error, and she was told that despite this, she would have to go back to the start and apply for another one. As she did not have her drugs, she was confined to bed unnecessarily. She had to go through the rigmarole of applying for another card and was told it would take six months. Can this not be short-circuited? Can we not support people with disabilities?

Senator Jillian van Turnhout

I welcome John Dolan from the Disability Federation of Ireland, as well as the aforementioned people. I would like to focus in my statement on what I believe are three fundamental failings in the provision of disability support services. One is that there are no independent inspections; the second is that the €1.5 billion of health budget spent on disability services is allocated to service providers rather than individuals; and the third is Ireland's current capacity laws, which date back to 1871. Each of these is totally unacceptable and leads one to question what we have learned from our egregious failings towards vulnerable groups in State care in the past.

We can all agree that the only way to ensure we never repeat our past failings is to understand why they happened and for current and future policy to embrace what we learned. This is exactly what the recent Amnesty International report, In Plain Sight, responding to the Ferns, Ryan, Murphy and Cloyne reports, sought to achieve. Its aim was encapsulated by its executive director, Colm O'Gorman, when he said "The past only becomes history once we have addressed it, learnt from it and made the changes necessary to ensure that we do not repeat mistakes and wrongdoing." In fact, the report identified a number of causal and contributory factors to the institutional abuse of children in State and church-run institutions, which unfortunately I see as being equally valid in today's debate: the absence of a voice, the absence of statutory inspections, deference, and the failure of the State to operate on behalf of the people and not interest groups. While the debate we are having is in the context of disability supports and services, it is not really about disability — it is about justice, equality and human rights for all citizens.

With regard to the regulation and inspection of disability services, recommendation 11 of the Ryan report implementation plan states that independent inspections are essential. I will quote from the implementation plan, but I will take the liberty of substituting the word "children" with "people with disabilities".

All services for [people with disabilities] should be subject to regular inspections in respect of all aspects of their care. The requirements of a system of inspection include the following:

There is a sufficient number of inspectors.

The inspectors must be independent.

There should be objective national standards for inspection of all settings where [people with disabilities] are placed.

Unannounced inspection should take place.

Complaints to an inspector should be recorded and followed up.

Inspectors should have power to ensure that inadequate standards are addressed without delay.

We are all aware of the commitment in the programme for Government, which we welcome, to put the draft national standards on a statutory footing. In fact, the second progress report on the Ryan report implementation plan, which was published last year, notes that a new target date of the fourth quarter of 2012 has been set. The report also notes that the commencement of the Health Act 2007 by the Department of Children and Youth Affairs to allow the independent registration and inspection of all residential centres and respite services for children with disabilities is contingent on the aforementioned action being taken. We still have not learned from our past and we still do not have the required systems in place. When will the Minister be in a position to give the necessary mandate and legal power to HIQA to inspect the centres?

In my research I was appalled to find that there had been no official audit of the number and location of centres; therefore, we actually do not know where all the centres are and who is running them. I hope the Minister of State can show me evidence that this is not right. I also ask the Minister of State to explain why interim measures such as instructing the HSE and social services inspectorate to commence inspections of centres where children or those with disabilities live have not been put in place until an inspection regime is operational.

The second issue I want to discuss is the individual resource allocation system. Everyone agrees that we need to provide an individualised budget. We have spoken in the past about deference to the State and the church, but what about the deference that people in receipt of disability services are forced to pay to the HSE and service providers in circumstances in which they are unable to question or provide any input into the services they receive, where they receive them or who provides them? I have heard of cases in which an individual has chosen not to avail of a service, yet the State makes payments to the service provider, so the State is paying for a service that is not being accessed. It does not make sense. As the system operates, it seems that people with disabilities are expected to feel lucky and grateful for the supports and services they receive. The supports and services are provided by the State because we value all citizens. We recognise that we have different needs at different stages of our lives, and our system should reflect this.

We are all aware of and welcome the commitment in the programme for Government to introduce modern capacity legislation. I will not rehearse what has already been said, but I will give a quote from one of our briefings which clearly shows why the law is so archaic. Frieda Finlay, chairperson of Inclusion Ireland, described the situation of herself and her daughter. She said: "As the parent of a 38 year old woman with an intellectual disability, who is a citizen by birth of an independent sovereign republic, I burn with anger every day at the thought that her capacity to make basic decisions about her life is governed by an Act signed into law by Queen Victoria and brought in by Gladstone's Government 140 years ago." The failure to repeal this law flies in the face of Ireland's commitment to the right of all people in Ireland to live with dignity and exercise self-determination.

We all know what needs to be done. What we do not need is more reports; we do not even need more debates. We do not need pilot projects or think tanks. We need action and implementation. That is the reason for my disappointment that amendments have been tabled by both the Government and Sinn Féin. I urge my colleagues not to push them to a vote. The original motion that was tabled should be a catalyst for change. Let us show this to be a Seanad motion. It does not have to be an Independent group motion. Let us collect around this motion and make it a Seanad motion, and let us show a strong sign of unity. That is what I urge my colleagues to do.

Senator Marie Moloney

I welcome all those in the Visitors Gallery. I also welcome the Minister of State. Yesterday I drove four hours from Killarney to attend a briefing by Inclusion Ireland. It was one of the most informative briefings I have attended to date. The issues that were raised at the briefing are some of the most important I have heard regarding people with disabilities and, for once, it was not all about money. It was about equality and fairness, and the right of people with disabilities to be treated with due respect and as an equal. Is that too much for someone to ask for in life?

We should focus not on the "dis" in disabilities, but on the word "ability" that is contained in the word "disability". We should focus on the ability of people with disabilities — on what they can do and achieve. Just because a person has a disability it does not mean he or she is on the scrapheap, or cannot think and speak for himself or herself. Of course some people have a profound disability and cannot speak for themselves, and it is incumbent on us to speak up for these people.

I had many items I would like to address but five or six minutes does not cover it. One of the most disturbing things I heard yesterday and it made me emotional when I heard it was one woman telling us the story of her daughter, who is officially known in this country as an "idiot" under the Lunacy Regulation (Ireland) Act 1871. How heartbreaking is it for any parent to hear that? This Act, introduced under British rule, is nothing short of an insult to people with intellectual disabilities and must change. That any human being can be diagnosed as an idiot or a lunatic is a disgrace and reflects badly on successive governments. I do not blame any one party because we are all to blame and this should have been addressed long before now. This is a dated and antiquated Act and I commend the Minister of State for the proposals to introduce the mental incapacity Bill. It cannot be put on the backburner and must be dealt with as a matter of urgency.

Yesterday I was advised of a person who had being using the services of an organisation but is no longer availing of these services. However, the money continues to be paid to the service provider even though the HSE has been advised on numerous occasions that the person is no longer using the service. We should consider something similar to the proposed health insurance for all whereby the money follows the patient and not the service. In this case the money should follow the person with the disability in order that he or she can use whatever services are of value to help the person with his or her disability and provide a superior standard of life.

I welcome that the Minister of State is carrying out the value for money review of the disability services. We need to know that the services being provided meet the objectives of the person with the disability. I add my voice to commend the former Minister of State, John Moloney, for instigating this review. I know the Minister of State will continue it and see it through.

I commend the Independent group of Senators for tabling the motion which allows us to have an open and frank debate on the matter. Although I agree with the sentiment of the motion I will be voting for the Government's amendment for two reasons. First, the Government must not rush this through. Proper legislation must be put in place and as someone said yesterday having no law is better than having bad law. I am allowing the Minister of State time to deal with the issue properly, but deal with it she must. Second, if I voted against the amendment I would lose the party whip, be expelled from the parliamentary party and find myself on the outside looking in. I want to be attending the parliamentary party meetings to keep the issue on the agenda and I will be doing that. At the end of the 24th Seanad if I have been instrumental in any way in bringing about change in this insulting Lunacy Regulation (Ireland) Act 1871, I will feel my time in the Seanad was worthwhile.

Senator Denis O’Donovan

I support the motion tabled by the Independent Senators whom I compliment on such an appropriate motion. I am reminded of a song about the 1913 lock-out led by James Connolly which referred to giving little in case they would ask for more. The disability area has been neglected for years. I accept that some progress has been made in the past 20 years but it has been insufficient legislatively or financially. I live in Bantry, next door to CoAction West Cork, which started off as St. Joseph's. The Minister of State is aware of the facility which she visited recently. In my first local authority election campaign in 1985, I visited the house of a family I knew well. Being anxious to get into the house and perhaps being somewhat nosey, I saw an adult in a pram — someone who had never been exposed to the public. Whether that was through embarrassment or a stigma, that person never saw the light of day and died many years ago. It was a frightening scenario.

When St. Joseph's started in Bantry it was completely voluntary for many years and it raised money through collections and so on. It expanded its services and now between young people and adults it probably has 300 clients. CoAction has gone into the Beara Peninsula and throughout west County Cork. It is covering areas out to which COPE was not able to reach. Approximately 15 or 20 years ago when feelers were put out to establish whether there were any people with disabilities in the Beara Peninsula, initially nobody came forward. However, when it provided a service, all of a sudden 26 adult people were in the loop. It shows that we have come from an intolerable situation in the 1970s and early 1980s and much progress has been made.

Senator Moloney referred to the legislative changes and I accept what she said in good faith regarding that. However, there is a question about funding for people with disability. They have been neglected historically by several governments, including those involving my party going way back. We must ensure there will be no rowing back in funding. We have made progress on an issue from a zero start. It is critical for the Minister to take to Cabinet that what is being given by way of financial services to groups representing people with disabilities must be not alone maintained but also expanded.

I note Senator Moloney's fears about not supporting the motion tabled by the Independent Senators. She gave two reasons, one being her fear of losing the whip. I lost the whip on two occasions in my political lifetime. The outcome was that it garnered me great respect within my party and for a change I called its bluff. When I was on the Government side of the House I had no problem taking on Ministers who were party colleagues on a number of occasions, whether it was parochial issues to do with Bantry Hospital or fisheries. During debates on Bills covering fisheries and harbour boards I tabled a substantial number of amendments against a Minister from my party, which in the past 12 months has not happened with the Government side. Sometimes that must be done — Members need to show their mettle and take them on. While I understand her reservations, if Senator Moloney is serious about an issue, there is nothing shameful from time to time in taking on her own party and standing up, in this case, on an issue on disability if she feels strongly about it.

Unfortunately I was unable to attend yesterday's briefing for a number of reasons — the Seanad was not sitting and I had to attend a funeral in Cork last night, which would have entailed travelling to Dublin and then going back down. I am probably living further from the capital than Senator Moloney.

Senator Marie Moloney

No, the Senator is not.

Senator Denis O’Donovan

I support this excellent motion, which is well thought out and sincere. I have lauded the Minister of State in the past for her work on her brief. If she is to be criticised, I will be vocal in that regard, but I will not do so tonight. I hope she will take on board what is being said here. The Independent Senators must be given credit for what they are doing. I urge Senators to support the motion unanimously in order that it can be a motion of unity of purpose from the Seanad as a whole, rather than an individual group.

Senator Sean D. Barrett

I support the Independent Senators on the other side for the work they put into this and support what we have heard from the Government benches, from Senator Conway and his colleagues. I am not skilled in matters of procedure, but No. 19 on the Order Paper is a Bill on fiscal responsibility put forward by me. When I put that Bill forward, the Leader said he would adjourn it and keep it on the Order Paper with two minutes pending. The Government should not vote down this motion and if the same formula as used for my Bill can be used to keep this issue alive, it should be used. I am not aware of the technicalities, but that formula keeps an issue alive and the Government does not need to vote it down. We can then keep an eye on the legislation coming forward from the Government to ensure it complies with what the Independent Senators have said. This is what I would like to see happen as I would not like the Government to vote down this proposal, which has been put together very skilfully and has also been skilfully argued on the Government side. Senator Conway needs no introduction on this issue and the account given by Senator Moran about going to Dundalk with her son was deeply moving. How could people who spoke so willingly on this issue vote down the motion? They should be offered the same formula as was offered to me if it is available. The Cathaoirleach is in the House longer than I am and could inform us whether it is possible to adjourn this and leave it on the Order Paper with time pending in order that the Independent Senators can watch what the Government does in response.

Senator Katherine Zappone

I welcome the Minister of State to the House again. I thank and acknowledge the leadership of Senator Mary Ann O'Brien in our group in terms of this issue and her passion for it and thank Senator Marie-Louise O'Donnell for supporting her. In fact, all of us in the group are involved in putting the motion forward as we all believe it is extremely important.

I agree with Senator Quinn on the question of the need for an amendment to this motion. As Senator van Turnhout asked, why should it not be a Seanad motion? Senator Barrett has just asked the same question. In support of this, I have questions for the Minister of State. I know she is committed to this issue but so are these women and this man. I understand the Minister of State needs to stay with her party and I agree that is as it should be. However, our focus is on inclusion and participation and it is on that our motion is based. The Government focus in its amendment is on the budgetary and fiscal situation. However, with our focus on inclusion and participation, we also recognise the economic climate. The Government focus starts out with the budgetary and fiscal situation, although it does include support for people with disability. Our focus on inclusion and participation is the focus required with regard to pushing forward a rights-based approach and this is something I know the Minister of State would agree with, as would all of us in the House.

A rights-based approach to inclusion and participation is important across the life cycle, for babies, children and older people. I hope we will all become older people, but as many of us know, we are more than likely to have a disability when we become older. Therefore, this is about us, although some of us have a disability younger. Our focus is on a sense of urgency. We want to see more movement sooner. The focus of the Government amendment is, as I read it, "steady as she goes". It is not that the Government disagrees with us, but it just wants to keep the same steady line. Our focus is on publishing the value for money report and reviewing the disability services, but the Government focus is on pointing out how great it is for being committed to this issue. We focus on the need for a reformed rights-based way forward, but the Government focus in its conclusion is that there is no need for change because everything is going okay.

Senator Marie Moloney

No, that is not true.

Senator Katherine Zappone

As Senator Barrett concluded, if we make this an agreed Seanad motion, we can keep it on the agenda in a different way rather than voting down the motion. It is clear that while both the motion and amendment share common ground and are largely in agreement, the focus of our motion has more to do with inclusion and participation, as sense of urgency and a rights-based approach.

Senator David Cullinane

I welcome the Minister of State to the House. I warmly commend all of the Independent Senators who sponsored this motion. We would certainly have given the motion our support, with the exception of the line "despite essential cutbacks required in the current economic climate". This was an area of concern. In the spirit of what has been proposed by the Independent Senators, we have no difficulty with agreed Seanad motions, particularly on issues as important as this. Perhaps there is a lesson to be learned, that we should ask for the support of other groups and for the names of those Senators to be attached to motions. We would certainly have supported this motion and our amendment was in that vein and was submitted due to the language used in one paragraph of the motion. We were not against the substance of the motion at all as it is an excellent motion.

I welcome to the Visitors Gallery members from Inclusion Ireland, Amnesty International and a number of other advocacy organisations. I was unable to attend the briefing given by Inclusion Ireland, but was sent a copy of its presentation which puts into context what this motion is about. It stated that the thinking and philosophy around the area of disability has changed significantly over the past ten years, but services have not moved on. The current system is expensive and inflexible and the person or his or her family does not get to have much say in how the money is spent or to have a choice of service provider. Perhaps more important, the money is attached to the service, not the person.

Like Senator Zappone, I agree that the Government amendment is about aspiration whereas the motion tabled by the Independent Senators and the Sinn Féin amendment calls for a number of changes. These call for the publication of the value for money and policy review of disability services. What is wrong with that? Our amendment calls for best practice in terms of how money is spent in the disability services area. What is wrong with that? It cites a weakness in the labour activation measure announced by the Department of Social Protection. Even Government Members should agree with that. It calls for the bringing forward of a legal capacity Bill and the putting in place of modern capacity legislation. What is wrong with that? It calls for the putting in place of the national standards for residential services for people with disabilities and for putting these on a statutory footing. It also calls for proper, independent inspections. Therefore, the motion and our amendment call on the Government to do what we all believe the Government should do in the area of disability.

The main reason we cannot support the Government amendment is that it states we should recognise that some reductions in disability services will be unavoidable and welcomes the aim of the HSE to tailor such reductions in a way which minimises the impact on service users and their families as much as possible. I do not believe that cuts to services for people with disabilities are unavoidable or acceptable. Far from it. They are unacceptable and must be avoided. That is what the Government should be ensuring.

Apart from the proposals in the motion and our amendment, I ask the Minister of State to consider the following. I call for the Minister to review the current Act as it relates to people with disabilities. My party fully supports a rights-based disability Act. I was in the Visitors Gallery when the Disability Act 2005 was brought in and was struck by the huge number of advocacy organisations and people with disabilities there who were not happy with the legislation being introduced. As legislators, we were bringing in legislation for people with disabilities with which people were unhappy. In fact, the Labour Party and Fine Gael voted against it at the time because they too wanted rights-based legislation. It is high time that when we, as legislators, introduce Bills we are conscious of the people who will be most affected and must avail of the services in question and that we ensure they are put at the centre of the legislation. Unfortunately, that does not always happen. There is also a need for robust enforcement mechanisms and the establishment of a new national disability strategy with real targets. One can put in place a number of documents and a strategy but setting the targets is what is important. We support the appointment of a disability ombudsman in the Department of the Taoiseach. We are putting forward clear proposals in order to be helpful to the Minister and the Government.

I warmly congratulate the Independent Senators for tabling this motion. I acknowledge the good work of the Minister of State, Deputy Kathleen Lynch, who has been in the Seanad for a number of very important debates, such as the debate on suicide, on carers and related issues. If we are to achieve all-party consensus, it can be given only when we have rights based legislation for people with disabilities. Neither my party nor I will be able to support anything short of that.

Minister of State at the Department of Health (Deputy Kathleen Lynch)

I am anxious to listen to as many members as possible, but I am equally anxious to ensure there is a right of reply, when I sit down. There is not much difference between us; it is a matter of emphasis, as some have pointed out. I am not in the business of telling people how to vote except, of course, when I am asking them to vote for me in a general election. It is really irrelevant how the vote goes tonight because we will do what we will do. Having listened to the contributions of all Members tonight, we are all singing from the same hymn sheet. We are all convinced that the way forward for people with a disability is on an entirely different path from what obtained in the past. I am convinced of that.

I apologise to the officials who have written an exceptional speech, which I read, but most of which I will not use. Many names were mentioned but let me take the opportunity to mention Mr. John Dolan, chief executive of the Disability Federation of Ireland.

Issues must be dealt with but the debate has highlighted the need for a radical change in how people with disabilities are allowed to live in the same space we live in. We have put so many barriers in their way, they cannot participate fully, whether in education or in services. I am not inclined to refer to the health service when I talk about disability. People with disabilities tell me they are not sick. They have been defined by a medical model as people who are sick, but they are not sick. One particular man who lives a very independent life says to me that he is not sick, but when he is sick he will go to this doctor, who will admit him to hospital if he is very ill. How we define people with a disability is very important. What is critical is the introduction of radical change.

When I addressed my first conference as the Minister of State with responsibility for disability, I was asked by a member of the audience to state what I hoped to achieve in the area of disability. I rattled off my list, standards, legislation and individualised budgeting. As I left the podium, the person organising the conference stated that I would never see them. The value for money audit, which was initiated by the then Minister of State, the former Deputy John Moloney, is almost completed and will be published in the near future. That will tell us where, on whom and on what we are spending our money. The individualised budgeting will follow from the value for money review. We have a policy group working on it even though it has not been completed and it is not published.

We must ask people with disabilities how they want to spend their day. I listened to a most incredible man, Mr. Tom Shakespeare, last week at the launch of the World Health Organization's report on disability. I said I would buy his name from him because it is invaluable in terms of politics. He said that when one is dealing with people with disabilities, one must ensure they are educated more than anybody else, because they will never be able to do the physical work that others are able to do. I am not solely responsible for the delivery of education.

It is proposed to publish the legislation this session. However if we are serious about the use of language, and I think language is very powerful, should the proposed legislation be entitled the mental capacity Bill? Should we even be using the term "mental capacity"? I know the thought of reviving that argument, with the possibility of delaying the Bill sends a shiver up everyone's back. Should we be talking instead about assisted citizenship? Should we get away from the concept of graduated capacity, with able bodied people having full capacity but others having graduated levels of capacity. Should we think in terms of all people being equal citizens, with some people needing additional supports to access that citizenship? Are we prepared to delay the legislation to get that right?

I am not certain of the response to that question. On the one hand, people will say, publish and be damned, others would see it as magnificent to be a world leader by 2016, the centenary of 1916. If we are to have a serious debate, other issues need to be looked at, such as individualised budgeting. There are certain organisations that have skilled their people to roll with this now, and are doing it anyway because they are taking portions of the block grant, and asking their clients what they want to do and how they want to live independently. The idea that the Department of Health would be solely responsible for people with disability is ridiculous. Where do people with disabilities live, if they want to live independently? Surely that is the responsibility of the Department of the Environment, Community and Local Government. This applies to services such as transport, education, social welfare.

The disability strategy group was always at the centre of government but was so limited it was worrying. The advice was to consider getting rid of it, but I said no to that suggestion and decided to put people, who have lived with disability on to the group and deal with each Department individually, asking its representatives to tell the group what it is doing in relation to the service for people with a disability. That is the focused approach we are bringing to bear. We have now for the first time, the city and county managers in the group, because they are decision makers; for example, it is they who make decisions on public lighting, footpaths, public seating, the location of the bus stop and so on. It is not rocket science — we can send people to Mars, yet are we saying we cannot do this. Of course, we can do it.

I do know the reason it takes hours and hours of professional involvement to tell a mother her child needs a speech therapist, or hours of professional involvement to tell her a child needs an occupational therapist when the child cannot sit properly. We must stop spending money in this way.

I am not a person who bashes service providers. They did a job when the State refused to do it. The State paid for it but they did the job the State was not prepared to do. Times have moved on and now we must accept that things will be done differently. Service providers will continue to be required to deliver their service, within budget, to those who wish to access them.

Was it the women's movement which first argued that if one is serious about equality, one must become blind to gender? Perhaps we must become blind to disability, while fully accepting that certain people need help to access services and the necessary social supports.

The capacity Bill will not be cost neutral as we will have to establish what will be known as a circle of support. We will have guardianships and will not always rely on families because they will not always be around. The ward of court system is outdated, expensive and cumbersome and should have been abolished years ago. This legislation will abolish it and guardians will be appointed instead. We will also have a guardianship office because safeguards will be required to ensure complaints can be made when guardians fail to do their jobs properly or in respect of decisions, whether assisted or otherwise, which they take in tandem with the person with the disability.

Capacity is a peculiar thing. We are told we make most of the important decisions in life in a split second. I do not know about Senators but I have made some big mistakes in my time. Why on earth do we believe that people with disabilities do not have the capacity to make decisions about their relationships, lives and medical conditions, where they wish to live or whether they wish to have children or make a will? Some people will require a great deal of assistance to make such decisions while others will need very little assistance. I know a young woman with an intellectual disability who could mind mice at a crossroads.

The assumption that we are all the same is wrong. What I have said is not vague or aspirational. The Bill and value for money report will be published in this session and individualised budgeting will be introduced. While it will not be for everyone, anyone who is interested in being involved will receive every assistance necessary to do so. It is important to be part of the mainstream and be able to do things such as add one's name to a local authority housing list. This will not be cost neutral but the substantial budget available to us will be spent in a different and more focused manner. We should take to heart the saying, "Nothing about us without us", which is often used by people with disabilities.

There are far too many organisations representing people with disabilities. They need to be streamlined because the notion that every one of these organisations needs an administration backroom is crazy.

While I do not believe there is much separating me and the Opposition, I will not tell Senators how to vote. I appreciate having opportunities to speak in this House on subjects about which I and Senators clearly feel passionately. I once turned down a request that I run for the Seanad when I lost my seat. Perhaps this is my punishment. I thank Senators for listening to me. The plans I have outlined are not aspirational but will be implemented. They are radical and different and will meet opposition from different quarters. With determination, I hope we will succeed.

Acting Chairman (Senator Diarmuid Wilson)

In the unlikely event that the Minister of State loses her seat at the next general election, I hope there will still be a Seanad which she can look forward to joining.

Senator Paschal Mooney

There is an old adage in show business that the act subsequent to a stunning performance usually starts with the words, "Follow that". I feel like such a performer taking to the stage after the Minister of State's speech. As a parent of a child with special needs who has listened to the debate and the Minister of State's impassioned, committed and sincere approach to this issue, I would not contemplate having a vote. I have always taken the view that politics should not enter issues of disability. This is also the message the Minister of State has conveyed. There will always be arguments about whether resources are adequate and various other issues which arise in the context of the motion. The Minister of State is correct that the speech written by her officials, which I have read, is comprehensive and focused and reflects the views she expressed.

I compliment the Minister of State on a report which was carried in the national media on a response from Rehab to an initiative she took, with her Government colleagues, to restore the allowance to people with disabilities who are working. I presume the measure will all also apply to those engaged in the national learning centres. Senator Moran and I are both parents of children with a unique genetic disorder, Prader-Willi syndrome, which is primarily though not exclusively an eating disorder. To put the matter bluntly, if sufferers of the syndrome, for which there is no cure, are not supervised, they will effectively eat themselves to death. This brings its own particular challenges.

My daughter, Siobhan, attends a national learning centre in Manorhamilton which has been a lifeline for her and many others. In the context of the Minister of State's remarks on the Department of Social Protection monitoring and following up on those who are retraining, the national learning centres have an exemplary record in this regard. Almost all of those who go through the system find meaningful employment, which is an extraordinary compliment to the whole concept. Obviously, the Minister of State has a particular interest in ensuring the restoration of the €10 or €12 that was being docked. I compliment her on achieving this objective as it is one of the little issues which pop up from under the radar from time to time. While the reduction received front page headlines, the restoration did not receive equal coverage.

The Minister of State is correct on how the Health Service Executive deals with people with disabilities. I am sure Senator Moran will not mind me pointing out that a comparison of the treatment she has received to date for her teenage son in the north east with the treatment we, as parents, received in the north west would lead one to believe that she and I lived in two different countries. When the Senator heard about the services and support networks to which my daughter had access and the proactive approach of the HSE in my area, she could not quite believe we were living in the same country. While I do not wish to speak for the Senator, her experience was the opposite of ours. My family has been fortunate in respect of the services provided by the State since the time Siobhan was first diagnosed. Incidentally, she was diagnosed with the condition within three weeks of birth in Holles Street Hospital following a genetic test, whereas it was several years before Senator Moran's child was diagnosed. Prader-Willi syndrome is a rare condition which creates a mild handicap.

The Minister of State is correct to state that one must address the number of experts involved in assessments. In our case, it was a simple genetic test done in Holles Street Hospital, whereas Senator Moran did not have that. There were many other things which were comparative.

The Minister of State said that HSE managers will have the scope within the national figure of 3.7% to vary the level of reduction which will apply to individual service providers and that the aim of the HSE will be to tailor such reductions in a way which minimises the impact on service users and their families as much as possible. I am sure she is more aware than I am that families are very concerned because of the current economic situation we are in.

In HSE North West, formerly the North Western Health Board, the main driver was a now retired senior civil servant called Pat Dolan, who headed up the disability services there. He only retired in the past year or 18 months. I was concerned when he was retiring because I knew how committed and passionate he was about what he was doing. I was concerned that he would be replaced by somebody who would be less effective and less committed and who would treat the job as such whereas he went the extra mile. I am sure the Minister of State has discovered that all those working in the State sector and involved with disabilities go the extra mile because they are all very committed but perhaps I am being a little unfair to his successor. I do not mean to be.

I hope the Minister of State will continue to monitor this to ensure there is the minimum reduction. Every euro taken from the disability sector has a far greater ripple effect than perhaps it would in any other area. I have no doubt the Minister of State will do so in light of the fact she looked after the minutiae of the allowance which was removed in the budget.

I am not being political but the Minister of State referred to her predecessor, John Moloney, in regard to the national disability strategy which she inherited and has committed herself to implementing not only today but on previous occasions in this House. Like the Minister of State, I pay warm tribute to John Moloney. I am very happy the Minister of State has been given this job. Her predecessor was totally committed to it from the day he took it on and she is equally committed. I have every confidence, even with all the problems in the economic field, given that we have a doughty a fighter as the Minister of State. I have known her for a long time and we have worked together in a variety of different guises. I am so pleased she has taken on this brief in the manner she has. Given her background in opposition, she was well prepared coming in to it.

Notwithstanding that, in some instances, Ministers of State in Administrations prior to this one sometimes settled into a comfort zone and were happy to turn up and listen to what the officials said. She is the complete opposite of that and I thank God on behalf of the parents of those with special needs that she is in this position. I wish her Godspeed.

Senator Paul Bradford

I welcome the Minister of State. I am sure she is pleased that for the second time in a week she has been described as a doughty fighter but we will leave it at that.

I welcome the motion and congratulate those who tabled it. The Minister of State's words were inspirational and the work she has done in this field since assuming this position of responsibility is laudable. I also acknowledge the work of her predecessor, John Moloney. It is interesting from a political perspective and that of politicians making decisions that both the Minister of State and her predecessor came to this portfolio without any particular training or expertise or letters after their names but both of them brought the experience of life, of public representation and of what they saw in their families and communities. I hope the Minister of State will continue in this vein of individual thinking.

It is interesting we are having this debate in the Seanad because we are beginning to debate and reflect on the use of, and necessity for, this House in Irish public life. One of the strengths of this House of the Oireachtas not only for decades but for generations is that it has provided a particular type of neutral debating space whereby people of all views can present their arguments and engage in political dialogue without the us against them or yes or no sort of politics which is sometimes evident in the other House. If the Seanad is to have a future, which I believe it has, one of its roles will have to be advocacy — advocating on behalf of marginalised, excluded and forgotten groups. The motion asks us to advocate on behalf of the disabled. It is a very broad subject and the Minister of State was right to say we must be careful about the language used.

The Minister of State has been given a clear message from all sides of the House that both Houses must see this issue not as one on which there should be a divide between Government and Opposition but as one on which we must all work together for people who, without our support, would be consigned to the margins of society. It is no less important than that.

It is difficult to argue with the motion. The language is modest, moderate and realistic and it recognises the fact that, because of the economic constraints on our society, essential cutbacks are required. I have never seen a motion before the Seanad or the Dáil tabled by the Opposition or by an Independent group which did the Government's bidding by recognising that we live in difficult economic times and that difficult and essential cutbacks may be necessary. I thank the Independent Senators for being so mature in recognising the political and economic space which we are in. I hope we can respond with an equally mature response and by saying there is no difference in our views.

We need to send a strong signal from this House that services provision and advocacy for the disabled are very much at the top of our political agenda. While we do not know our future, we know there are tens of thousands of people who, with a little bit of help and new thinking, can have a real future, can play a role in their families and communities and can live independently, where possible. We are in a new space in regard to services for the disabled in terms of thinking and planning for a future which may not have been contemplated ten or 15 years ago. There have been huge advances from a medical perspective. We must match those medical and social advances with political advances. What the Minister of State said is, hopefully, the beginning of ground-breaking thinking and politics from her, her Department and the Government.

The facts speak for themselves. I refer to the acknowledgement of the €1.5 billion being spent on disability services. The fact the vast majority of that is non-discretionary, as far as the people on whom it is being spent are concerned, must be noted with concern. I was interested in what the Minister of State said about the mental capacity legislation. The Oireachtas Joint Committee on Justice, Defence and Equality is about to consider it. She raised the interesting issue of language and it is something on which we will reflect at that committee.

The final part of the motion is one on which we need to reflect. It asks the Government, under the departmental leadership of the Minister for Social Protection, Deputy Burton, to develop effective and appropriate legislative and policy responses across all Departments. That is central. While the Minister of State will play a lead role, her thinking and approach must not begin and end in her Department. It must invade thinking and policy across Departments. This is central to the progress we wish to achieve.

The words of the Minister of State are quite clear and we are at one on this matter. The matter is political but not party political. It requires political leadership, which the Minister of State is willing to provide, but it is not an issue on which there should be a party political divide. The motion is worthy of the most serious consideration by the Oireachtas and Senators are honoured by the opportunity to listen to contributions by the Independent Senators and the Minister of State. We should ensure that in word and in deed, this is acted upon.

Senator Mark Daly

I welcome the motion and the Minister of State. This is an important debate. I look forward to continuing the debate in the coming years. The UN Convention on the Rights of Persons with Disabilities was not ratified by the previous Government and is not being ratified by the Government. I received replies from the Minister for Justice and Equality recently. The Government takes the approach that it will only ratify the convention it has signed up for after it has passed the necessary legislation. That is work that will never end because there is so much to be done in getting the rights of people with disabilities onto the Statute Book. It might be decades before we end up passing legislation to enshrine the rights people should have in law. Perhaps the Minister of State can bring this point back to her colleagues.

If a member of the deaf community with Irish sign language wants to interact with Members of this House, there is no provision for a sign language interpreter. Some 5,000 members of the deaf community use Irish sign language and 50,000 people can use Irish sign language. The Good Friday Agreement provides for the use of Irish sign language North and South. It is in place in the North but there is no provision of services in the South for people to interact with State agencies, the medical profession or Members of the Oireachtas. They cannot call upon interpreters to enable them to communicate with teachers in school, a principal or a public representative. We have a long way to go on the most basic matters. One would think that a member of the deaf community would be able to communicate with a Member of this House, yet if we want to bring a member of the deaf community to speak to a Minister, it will cost €200 to provide an interpreter. That will have to be provided from the Member's pocket. I am not worried about the money but about the fact that it is such a laborious process. That is a small example of how we are not connecting people with disabilities to Ministers.

I welcome this debate. We have a long way to go and we will never get there because it is a journey without an end. It is continuing to provide services to people with disabilities and those who cannot speak for themselves, literally in the cases of people who are unable to speak. It is our job to speak on their behalf to ensure that in these tough times the Government can provide the required services for people to live with dignity.

Senator Maurice Cummins

Members who proposed and seconded the Government amendment spoke eloquently and passionately on the amendment. I fully agree with the Minister of State that we are all singing from the same hymn sheet. We will withdraw the Government amendment to the motion. I hope the House will unite behind the motion in order that we do not have a vote. I compliment the Minister of State on the passion she has shown in her response. We all believe she is the right woman for the job and if anyone can deliver for people with disabilities, she can.

Senator Mary Ann O’Brien

I apologise for my appalling manners. I was so nervous earlier that I forgot to welcome our guests. I thank them for coming and listening to us for hours and hours as we debated passionately on this subject. Unfortunately, I do not know the Minister of State well. I thought I was passionate about this but she is so inspirational. I am so excited and really feel we have hope. At the beginning of my speech, I said that so many politicians had aspired to change things but this is a pivotal moment for the Seanad that we are able to join up and go forward. I salute the Minister of State, who has led us, and she will make a huge difference to 750,000 people in this country. We are all looking forward to being led by her.

I cannot be nice every minute.

Senator Martin Conway

Awesome chocolate.

Senator Mary Ann O’Brien

I have this unbelievable defect in my personality. Kevin, who is my assistant, is sitting and watching me. He is actually not watching me because he is visually impaired — he is blind. He supports the motion. He is a testament to how a visually disabled person can make someone who is parachuted in here as a politician and a Senator look fantastic. He has worked tirelessly on this motion. He is a genius but he should not take that too seriously. The defect in my personality is that I love to see a critical path and things being done. I welcome the Minister of State saying that the value for money report will be published. I would love her to ring Laurence Crowley tomorrow and ask him what is the date. John Moloney was in this position in 2008 but it is now 2012. If we were in the private sector, we would be out of business. We must have a date. I was wrong about rushing legislation and Senator Moloney is correct on this point.

I lost a little disabled boy in 2008. Members should not take this the wrong way but Jonathan and I were quite pleased that he had died for one reason because he had no hope. We always wondered what would have happened if we had died before him. Every other parent with disabled children wants his or her children to die before him or her because of the law. There must be a sense of urgency for those parents.

I have nothing else to say in my very small summing up, expect that each and every Senator who spoke did so eloquently and passionately. Every single contribution was of great value to the Minister of State. We look forward to her leadership in this area in the future.

Senator Martin Conway

As my Independent colleagues know, I spoke with passion about an amendment but I was still uncomfortable with it. Everyone here is singing from the same hymn sheet, as the Leader pointed out, and it is a very good day for Seanad Éireann. If anyone questions its value all he or she needs to do is come to the Visitors Gallery today or watch proceedings and he or she will realise there is some exceptional ability in this House that can and will provide leadership during this difficult time and be an inspiration for change. We are fortunate to have a Minister of State with such capability. I withdraw the Government amendment and unite in supporting the Independent motion.

Amendment, by leave, withdrawn.

Senator David Cullinane

I move amendment No. 2:

To delete all words after ‘‘Seanad Éireann'' and substitute the following:

—recognises the need to protect those with a disability in our society, ensuring that people with a disability can continue to lead a fruitful and active life;

calls for the immediate publication of the Value for Money and Policy Review of Disability Services;

acknowledges the need for best practice in the manner in which funding for disability services is deployed;

expresses our regret that the labour activation measure announced by the Department of Social Protection to date prevent people in receipt of Disability Allowance availing of the programmes, despite research showing that two thirds of people with disabilities were willing to work with the correct supports [ERSI and OSI (2011)];

calls for the Government to immediately commit to bringing a Legal Capacity Bill before the Oireachtas to repeal and replace the Lunacy (Regulations) Act 1871, which takes away decision-making rights from people with an intellectual disability and results in Ireland being decades behind Europe and North America in the area of capacity legislation;

calls on the Government to outline its plans to put the National Standards for Residential Services for People with Disabilities on a statutory footing and ensure that services are inspected by the Health Information and Quality Authority [Programme for Government 2011-2016] given that there are over 8,000 adults and over 400 children with an intellectual disability in full-time residential care paid for by the State, but which are not inspected by any Government agency [National Intellectual Database HRB (2011)];

Senator Kathryn Reilly

I second the amendment.

Amendment, by leave, withdrawn.

Motion agreed to.

Seanad Éireann debate - Wednesday, 25 Jan 2012

Services for People with Disabilities: Motion

Seanad Éireann debate -
Wednesday, 25 Jan 2012