Joint Committee on Health díospóireacht -
Wednesday, 17 May 2017

UN Convention on the Rights of Persons with Disabilities: Discussion

Chairman

The purpose of this meeting is to engage with Mental Health Reform, Inclusion Ireland, the National Federation of Voluntary Bodies and the Not for Profit Business Association on the UN Convention on the Rights of Persons with Disabilities and its relevance for health and well-being. We will look at some themes and specific areas for consideration, including disability and disabling conditions throughout the life course; response to planned anticipation of full inclusion; creating an enabling community; public services other than those of health - whether they are a hindrance or a help; and whether budget 2018 matters.

On behalf of the joint committee, I welcome Dr. Shari McDaid and Ms Caroline McGuigan, CEO of Suicide or Survive, appearing on behalf of Mental Health Reform; Ms Kathryn O'Shea and Ms Sarah Lennon of Inclusion Ireland; Mr. Brian O'Donnell and Mr. Christy Lynch of the National Federation of Voluntary Bodies; and Ms Kathleen O'Meara and Mr, Brendan Lennon of the Not for Profit Business Association.

By virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of their evidence to the committee. However, if they are directed by the committee to cease giving evidence on a particular matter and they continue to do so, they are entitled thereafter only to qualified privilege in respect of their evidence. Witnesses are directed that only evidence connected with the subject matter of these proceedings is to be given and they are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person or an entity by name or in such a way as to make him, her or it identifiable. I advise witnesses that any submission or opening statement they make to the committee may be published on the committee website after the meeting.

Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official, either by name or in such a way as to make him or her identifiable.

We have four separate submissions. There is a long submission from the National Federation of Voluntary Bodies so I ask its representatives to summarise rather than present the full submission. I now call on Dr. McDaid to make her opening statement on behalf of Mental Health Reform.

Dr. Shari McDaid

I thank the committee for its invitation and for agreeing to allow me and Caroline to speak about the facts and the consequences of the mental health challenge facing us. I will speak to Mental Health Reform's position and Caroline will speak to the issues from her own personal experience.

Mental health is a huge issue for our country and for our well-being but our response is neither adequate to the need nor proportionate to the scale. We will speak to just two aspects of this challenge today, namely, civil rights and mental health services. Mental health difficulties are one third of the disease burden in Europe. By 2030, mental health difficulties are expected to be the largest contributor. The cost of poor mental health in Ireland has been estimated at 2% of GNP. This represents more than twice the cost of being overweight and obesity. However, these figures are a superficial yardstick. We are here today to talk about people in crisis, for whom support is inadequate and unacceptably lacking.

Ms Caroline McGuigan

I am CEO of Suicide or Survive, a voluntary organisation that I founded, and I will speak from my personal experience. I am a trained psychotherapist, a trained advocate and, most important, I am a mother of a 19-year-old boy, Conor, who was born when I was attending psychiatric services. I am also the mother of a 16-year-old girl, Amy, born years later when I was attending Trinity College.

People can learn to manage their mental health and lead full and meaningful lives. Every single one of us has mental health and we will have dips in our mental health because we are human beings, but how we treat people in the different stages of their mental dip has a massive impact on their distress, their experience and their recovery.

I once read a heartbreaking Irish survey in which 40% of people said someone like me should not have children, and we need to turn that around. At a time in my life when I lay in a bed having attempted suicide, when I died and was brought back to life, my husband was encouraged to sign me in.

I am grateful he had enough love and understanding to know that to sign me in involuntarily would have had a massive negative impact on my recovery.

Mental health can be and is messy, but by being educated and informed I can, like everybody else present, manage life and crisis, but it requires all of us to work together.

Dr. Shari McDaid

In Mental Health Reform's view, excluding people involuntarily detained in psychiatric units from the right to an advance health care directive under the Assisted Decision-Making (Capacity) Act 2015 is clearly discriminatory. It is clearly contrary to the UN Convention on the Rights of Persons with Disabilities. The Mental Health Act 2001 is simply out of line with the UNCRPD. In March 2015, a Government-appointed expert group made 165 recommendations for reform. Only one recommendation has been enacted.

The Mental Health (Amendment) (No. 2) Bill passed Second Stage on 2 May and is now before the committee. It strengthens the rights of people when in hospital for mental health treatment. We advocate that the committee prioritise this Bill in this session. We ask members to ensure that the Government delivers the comprehensive legislation required to reform the mental health civil law by the end of this year and to verify the promised timeline.

People in emotional distress face unacceptable gaps in services. Out-of-hours support from the HSE's mental health services is uneven and inadequate. This year again we have closure of some child and adolescent mental health services to new referrals due to lack of staff. There is undercapacity in primary care mental health supports and there are waiting lists for counselling services in third level education.

The Government's meagre allocation of just €15 million towards implementing A Vision for Change in 2017 fails to meet the clear commitment in the confidence and supply arrangement to fully implement the policy. It is time the Government was held to account for this commitment. Today we ask the committee to urgently prioritise consideration of the Mental Health (Amendment) (No. 2) Bill 2017 and ensure it returns to the Dáil for Report and Final Stages before the summer recess; to seek real clarity from the HSE on expenditure to date of the 2017 allocation of €15 million in development funding and on any unspent funding from previous years; to call the Department of Health and the HSE together, before the summer recess, to account together on the funding required in 2018 to deliver on the confidence and supply arrangement commitment to full implementation of A Vision for Change, including the deficit accrued from this year's shortfall in allocation; and to establish with the Department of Health the timeframe and the process for the review of A Vision for Change

People with mental health difficulties depend on the committee's actions and on its advocacy. I thank the committee for its consideration.

Chairman

I call on Ms Kathryn O'Shea to make the opening statement on behalf of Inclusion Ireland.

Ms Kathryn O'Shea

I am the chairperson of Inclusion Ireland and am also a parent of two young adults with disabilities. I thank the Chairman for the invitation to address the committee. Inclusion Ireland is a national, rights-based advocacy organisation that works to promote the rights of people with an intellectual disability. Our work is underpinned by the values of dignity, inclusion, social justice, democracy and autonomy.

Health and well-being matter. The United Nations recognises the relevance of happiness and well-being as universal goals and aspirations in the lives of human beings around the world, and the importance of their recognition in public policy objectives. Research shows that adults with a disability experience multiple quality-of-life challenges, including poor health, mental distress and housing problems and it is clear that Ireland must improve. The United Nations Convention on the Rights of Persons with Disabilities offers us a way to address the challenges and our presentation today focuses on three of the UNCRPD articles, all of which are relevant to this particular committee, namely, Article 25 on health, Article 12 on equal recognition before the law and Article 19 on living independently and community inclusion.

Ms Sarah Lennon

I echo the thanks from Inclusion Ireland for the invitation to speak here today. As Ms O'Shea has already said, it is really important that the committee is addressing not only of the issue health, but also the issue of well-being. If we take well-being as a byword for happiness, we can understand why people with disabilities wish to move away from the idea of a medical or charitable model to a model that is embedded in human rights and equality. The convention offers us an opportunity to do that in Ireland. While it does not create any new rights, as is routinely said, it was designed as a response to the unique barriers that our society throws up for persons with disabilities in accessing their rights. We will look at only three of its 50 articles today. Any one of them might have been relevant, but we will keep it to three in the interests of brevity.

Article 25 relating to health requires that state parties provide persons with disabilities the same range, quality and standard of free or affordable health care and programmes as other persons. Through research we know that people with disabilities have a lower uptake of health promotion and screening services such as cervical and breast cancer screening. Disabled women may find health screening information inaccessible or may not have the support they need to make appointments. Information on these services should be provided in a range of accessible formats for all persons with disabilities. Issues relating to health inequality become even more important as people get older. The Irish longitudinal study on ageing, TILDA, reported that people with disabilities were much more likely to experience social exclusion and loneliness and three times more likely than the general population to experience depression as they age. Additionally, older adults with disabilities were more likely to experience vision and mobility challenges, chronic constipation, higher prevalence rate for falls, higher incidence of mental health and emotional health issues and a much higher incidence of poly-pharmacy, that is, using five or more medications. People living in congregational settings, institutions and community group homes were more likely to feel socially excluded. Inclusion Ireland believes that health and social care services should plan for the appropriate supports needed in the future. They should use the data available to put those plans in place for people as they age. These supports should be person-centred to protect against social exclusion and loneliness particularly for those in or leaving institutional settings

Article 12, which is focused on equal status, is often described as the beating heart of the convention. It is concerned with equal recognition before the law, which is central to accessing all sorts of services, including health services and is critical for well-being. Equal status in Ireland has been taken to mean supported decision making and having a choice on how to spend money, where to live and living in the community. Instead, in Ireland we retain the Lunacy Regulation (Ireland) Act 1871 on our Statute Book. Under that Act, people can be made lunatics and idiots by law. Until the commencement of the Assisted Decision-Making (Capacity) Act 2015 in full and with it a supported approach to decision making, we retain that status-based approach. The Assisted Decision-Making (Capacity) Act introduces modern infrastructure for supporting people to make decisions or in some limited circumstances to have decisions made for them but in accordance with their will and preference. Budget 2018 must include appropriate resources for the decision support service, DSS, within the Mental Health Commission. It has taken almost two years since the enactment of the Assisted Decision-Making (Capacity) Act for the recruitment of a director of the DSS to begin. Once appointed he or she must be given the resources to carry out his or her important functions, including developing codes of practice. Self-advocates and experts through experience must be consulted in developing those codes of practice. Budget 2018 must also provide funding for the education of individuals, their families and members of the public.

Article 19 on community living requires state parties to recognise the equal right of all persons with disabilities to live in the community. A recent comment by the CRPD committee said institutions create isolation, lack of control, lack of choice, rigidity and a paternalistic approach. As we sit here today, 2,580 persons remain in residential institutions in Ireland in spite of their planned closure by 2018, as set out in the report, Time to Move On from Congregated Settings. The programme for Government targets a move of one third of residents by 2021, a figure most likely to be reached by the deaths of residents. Ireland must accelerate the process of de-congregation and de-institutionalisation while ensuring that persons with disabilities receive individualised supports in the community.

The UN convention reaffirms the right of people with disabilities to health and social supports in the community, rather than segregation. Ireland must commit to and resource a personalised budget system. We are currently undergoing a task force process. It is essential that we come out of that with a tangible system for people to have personalised services. In the United Kingdom direct payments have improved independence, well-being and quality of life.

The CRPD committee has said that state parties should ensure the personalisation of support, including personal budgets.

I thank the committee again for the opportunity to raise these issues relating to both health and well-being. They are only the tip of the iceberg in terms of the Convention on the Rights of Persons with Disabilities, CRPD, and its potential impact. The convention has the potential to change radically how we think about the rights of persons with disabilities and how, as a society, we interact with each other. It is to our shame that Ireland is the last EU country to ratify. We are among the last 15 in the world to do so. We know from the experience in other countries that ratification has accelerated reforms. The progress has been slow in Ireland. We urge the State to ratify as soon as possible.

Chairman

I thank Ms Lennon. Our third statement will be from Mr. Brian O'Donnell of the National Federation of Voluntary Bodies.

Mr. Brian O'Donnell

I thank the Chairman and fellow members of the committee. I am very happy to accept the invitation of the committee. I will be brief.

The National Federation of Voluntary Bodies is the national umbrella organisation of non-governmental service providers who provide services to people with intellectual disability and autism. In all, we have 60 member organisations which between them account for 85% of direct service provision to people with intellectual disability and autism in the State.

Statutory responsibility for the provision of services rests with the Health Service Executive, HSE. It discharges that responsibility by engaging with voluntary organisations on a service arrangement basis.

The United Nations Convention on the Rights of Persons with Disabilities provides us with a clear framework to focus on the ways in which Government and society must ensure participation restrictions are identified, addressed and removed, and thereby people with disabilities can be afforded their human right to live inclusive lives in the community as fully active and participating citizens. The convention enshrines the principles of respect for the inherent dignity and individual autonomy of persons with disabilities, respect for difference and acceptance of persons with disabilities as part of human diversity in humanity. The convention recognises the value of existing and potential contributions made by persons with disabilities to the overall well-being and diversity of their communities.

I will touch briefly on ways in which the principles of the convention are relevant at all stages of the life course of an individual with a disability, but first I want to share with the members a very brief outline of the life story of one person as an embodiment of the potential that the full ratification and implementation of the convention would bring. At the national federation, we work closely with a self-advocate, Martin Dooher. Martin has an intellectual disability, health difficulties and uses a wheelchair. He has given his permission for us to share his story with the members today. When Martin was a child, his parents were told, as was the practice of the day, that the best option for his life and that of his family was for him to live in an institution, and so he was moved from Ballina, County Mayo, to live in a congregated setting in Cork at the age of nine. For a number of years he lived in various institutions, none of which was close to his family, and in his 20s he began living in bungalows on congregated settings lands, followed by group homes in the community, and then an apartment that belonged to the service provider. Finally, at the age of 65, just before Christmas last year, Martin became a tenant in his own apartment, which he secured through mainstream social housing and with the supports he needs in place from the supported independent living programme with the service provider that supports him, namely, the Brothers of Charity services.

For Martin, the universal good things in life - living where he chooses, with security of tenure, maximising his potential for independent living with supports in place as required - have become a reality. He is enabled to make valued contributions in the wider life of the community as an advocate, a neighbour, a pet owner, a friend and an uncle. He can have his family come to stay in his own home. These things happen when the services and supports that are offered are tailored to the individual choice and needs of the person, with the various Departments taking up their appropriate roles. For Martin, his housing is provided by an approved housing body through the local authority, while supports are in place via a voluntary service provider funded by the Health Service Executive, HSE. Fundamentally, the natural supports that come about through being part of a community are growing and developing.

As we move through the life cycle, the range of Departments that have significant responsibility for maintaining the vision of life lived to its full potential in line with the UN convention grows. As children reach school age, for instance, the national federation warmly welcomes the implementation of a new policy for allocation of special needs teaching resources in mainstream school settings, which will come into effect in autumn 2017, as a wonderful example of the potential of Departments to influence positive change. The focus of this policy moves from a deficit-based approach that provided resources based on the diagnosis of a child to a system based on the profiled educational needs of each school. This will address the unfairness that existed in the previous system, whereby many parents were struggling to access assessments to quality for educational resources, which had a particularly negative impact on children from disadvantaged areas.

Similarly, as young people move into the transition from school to post-school options, the comprehensive employment strategy for people with disabilities provides a framework which must be implemented to ensure a range of Departments meet their responsibilities to enhance inclusion and develop the potential of individuals to access work, and that of employers to recognise the value of people with disabilities as employees. The 2011 census provides stark evidence of the extent to which people with disabilities are much less likely to have employment than other people of working age, something that is even more acute for people with intellectual disabilities. The national federation strongly advocates for the implementation of the comprehensive employment strategy through cross-departmental collaboration to ensure current barriers to employment are removed in order that the vision of the strategy, that is, that people with disabilities are supported to maximise their potential and enabled to have jobs, earn a living, and make a contribution, is fully realised in line with the State responsibilities set out in Article 27 of the convention.

Article 19 of the convention unequivocally recognises "the equal right of all persons with disabilities to live in the community, with choices equal to others", and places responsibility on states to take:

[E]ffective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

(a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement.

Very positive work has taken place under the National Housing Strategy for People with a Disability 2011-2016, which is a joint strategy of the Department of Health and the Department of Housing, Planning, Community and Local Government, to mainstream the assessment and allocation of housing resources to meet the needs of people with disabilities. Under the strategy, pathways for people with disabilities to access mainstream housing options through funding schemes such as the capital assistance scheme, the capital advanced leasing facility and the housing assistance payment, HAP, have been improved, and housing and disability steering groups have been established at local authority level to ensure an ongoing cross-sectoral focus on the meeting of the housing needs of people with disabilities.

However, at this time there are very significant barriers which mean that many people are not enabled to access the opportunity to live in community settings in line with the convention. There has been a lack of provision of funding for residential supports in the community over the past eight years which means that even with the mainstreaming of housing options, the funding for the supports to enable people to take up these options is severely limited. The numbers of people with disabilities requiring support and the increased age of carers is leading to built-up emerging need. In just one of our member organisations, for example, 285 people are living in their childhood home, with family support, in which the primary carer is over 71 years of age, and 98 of whom are over 80 years of age. Additionally, in this one service provider organisation, there are 205 carers in the 61 to 70 age range, and these represent significant emerging need for residential support to come, which needs to be planned for now.

It is fair to say that what is required as a matter of urgency is a commitment by Government to a multi-annual investment programme commencing with budget 2018. We have clear evidence that accessing the human rights set out in the United Nations Convention on the Rights of Persons with Disabilities to live in the community, to be seen as a contributing member of society and to reach one's full potential is transformative in the life of people who have had the opportunity to do so already. We look forward to the day when all citizens with disabilities in this State are given the opportunity to reach their full potential and access their rights as set out in the convention.

Chairman

I thank Mr. O'Donnell. His full submission will be on the website.

Mr. Brian O'Donnell

I thank the Chairman.

Chairman

Our last opening statement comes from Ms Kathleen O'Meara of the Not for Profit Business Association.

Ms Kathleen O'Meara

We thank the committee for the opportunity to speak here today and we commend it on its consideration of the issues which are raised by the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, in the area of health and well-being. The Not for Profit Business Association represents some of the largest providers of services to people with physical, sensory and intellectual disabilities. The members of the association work to effect positive change in the lives of the 40,000 people who use our services. We believe that ratification and, more importantly, implementation of the convention will enshrine the equal rights of people with disabilities to live in a way and in a place of their choosing. It is incumbent on Government, public services, service providers and society as a whole to make this aspiration a reality.

Prior to its adoption in 2007, Ireland showed great leadership in negotiating the convention, which has been well recorded. However, a decade later, we have not been so pioneering. Ireland, as was stated already by my colleagues, is the last country in Europe to ratify the UNCRPD. There are actions required prior to ratification but the process has so far has been characterised by delays. Some progress is being made with the Disability (Miscellaneous Provisions) Bill 2016 going through the Oireachtas, although large parts of this legislation remain unpublished, the enactment of the Assisted Decision-Making (Capacity) Act 2015 and the Criminal Law (Sexual Offences) Act 2017. Some progress is being made. Ratification is dependent on enactment rather than on commencement of legislation and on the development of laws rather than the achievement of quality-of-life improvements for people with disabilities in Ireland.

In the past ten years, austerity has impacted significantly on public services, particularly health services and social protection. The UNCRPD requires states to recognise that people with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination. This is an area where no new law is needed but where Ireland falls short in terms of provision for people with disabilities. People with disabilities are not sick but they are more likely to suffer ill-health. Census 2011 found that just 16.5% of people with a disability indicated they had very good health compared to 66.9% of those without a disability. Almost 11% of people with disabilities indicated that their health was bad or very bad in stark contrast to just 0.1% of those with no disability. Many things contribute to poorer health outcomes for people with disabilities such as poverty, inappropriate housing, difficulty accessing transport, lack of employment and education. People with disabilities are disproportionately impacted upon by cuts in health spending and by waiting lists and delays. Low incomes mean that they do not have the ability to mitigate the impact of these delays by buying services, which is par for the course for other members of the population. Low disposable income and increased costs of living also limit people’s ability to look after their health and well-being through things such as purchasing good, healthy food, activities to maintain good mental health and social activities.

Things that the rest of us take for granted can be major barriers to accessing appropriate health care and supports for well-being for people with disabilities. I will give some examples. A lack of access to information and advice in a format and manner that suits the person's needs, such as access to an Irish Sign Language interpreter, limits the control individuals have over their own health. A lack of hoists and access in GP surgeries often unnecessarily escalates minor conditions to hospital admission. A lack of modern legislation to support autonomous decision-making has often excluded people with disabilities from decisions about their health. The enactment of the Assisted Decision-Making (Capacity) Act will change the law but we need to change the culture through greater health literacy and emphasis on self-management. There is a lack of equality when it comes to enabling people with disabilities to access screening, health promotion and sexual and reproductive health services. A lack of appropriate personal assistant, PA, supports makes it difficult for people with physical disabilities to go about their daily activities or access health services. There are also inconsistencies in access to PA supports within the hospital system. A lack of appropriate housing leads to inappropriate placement of younger people with disabilities in nursing homes and limits their independence, choice and social integration which impacts on their health and well-being.

The United Nations convention does not open a locked door to greater equality and better services. That is not what it does. That door is already open to us. Nothing says that we need to wait for ratification to take steps to make Ireland a far better and fairer place to live for people with disabilities. Investment in better access to health services for people with disabilities needs to be a priority now for budget 2018. Equality-proofing all public investment would ensure that Government spending always promotes inclusion.

Following ratification, Ireland’s record will come under review by the UN Committee on the Rights of Persons with Disabilities. It will be the real experiences of people on the ground that will count rather than the list of legislation in place. People with disabilities are the greatest users of health services but are the least provided for. Practical change is needed in addition to legislative change if Ireland is to achieve both the word and the spirit of the UNCRPD.

Chairman

I thank Ms O'Shea. Sorry, Ms O'Meara. I thought I would get through a meeting without misnaming somebody but I have not. We will open the discussion for observations from our members. We will take them in groups of three. If the witnesses make a note of the questions, we can deal with them as they arise. Our first three contributors are Deputy O'Reilly, Deputy Murphy O'Mahony and Senator Colm Burke.

Deputy Louise O'Reilly

I welcome the witnesses and thank them for the evidence they provided. I have a number of questions. The first is to the witnesses from Mental Health Reform. Ms McGuigan started by saying that she is a mam, which is a good way to start and an indication of how personal the story is to her. As part of the maternity strategy, we are supposed to be employing more perinatal psychiatrists. There is an absolute dearth of mental health help for pregnant women and new mothers. From Ms McGuigan's own experience, she might be able to tell us about how important that kind of intervention is because it is an area that is very often overlooked. We tend to refer to it as the after baby blues but it is not that; it is a form of depression and is something that needs to be addressed. In her statement, she asked the committee to get the Department to put in place a timeframe for the review of A Vision for Change. We all know that the recommendations in A Vision for Change have not been implemented. Ms McGuigan refers to the fact that they are in the confidence-and-supply agreement but so are a great many other things that are not happening. If Ms McGuigan was to guide those discussions in terms of how the review might take place, what are we looking for? A Vision for Change is 11 years old so it is a ten-year strategy that is already a year out of date. If we were going to try to make up that ground, does Ms McGuigan have any suggestions that might guide those discussions?

I am interested to know the view of all our guests on the delay in ratifying the UNCRPD and their view of the potential adverse effects of the delay in implementing European disability legislation such as the European Accessibility Act, which is under negotiation. I am conscious we are already behind. We have a huge amount of ground to make up. While we have fallen behind, the European Union is moving ahead.

We are going to need to play a significant amount of catch-up. If the accessibility Act is passed, do the witnesses believe we are prepared for its requirements? What impact will delaying the UN Convention on the Rights of Persons with Disabilities, UNCRPD, have on that?

The European disability strategy 2010 to 2020 seeks to ensure the equal participation in life of all citizens with disabilities, the same as any other citizen. How are we going to shape up in respect of achieving the goals of this strategy? Can we do so without ratifying the UNCRPD? Ms O'Meara was saying that there is a lot we can do. Do the witnesses think that not ratifying the UNCRPD is a handy excuse for doing nothing? Is there scope for us to do much that we are not doing? Can the witnesses point us in the right direction? When we ask questions, we are often told that after we ratify a convention it will be like turning on a tap. I suspect it will not be like that. Judging by the witnesses' nods, they have the same suspicion.

Deputy Margaret Murphy O'Mahony

I welcome the witnesses and thank them for coming in. Ms Lennon was talking about health screening for people with a disability, and suggested providing information in more accessible formats. Could she give us more detail and maybe a few suggestions on that?

My other questions have to do with the ratification of the convention. I have been the Fianna Fáil spokesperson on disability since roughly this time last year and I am green in the face from trying to get the Minister of State, Deputy Finian McGrath to go ahead with ratification. The witnesses do not find it acceptable either, of course. Do they have any other suggestions for getting this to move a bit faster? Is there anything they or I can be doing?

The convention does not specifically define disability or persons with disabilities. However, it provides for the abolition of certain laws and regulations. Do the witnesses believe that these recommendations are viable and transparent, given that the terms have not been defined from the outset? Would we run into difficulties because of this? The convention would have to be monitored nationally and internationally. Do the witnesses think that the State is adequately prepared to comply with its terms, specifically with the requirement for periodic reporting? The convention does not introduce any new human rights, but provides clarity on what is already there. While no change can be made to the convention now, do the witnesses see any way around this issue?

Senator Colm Burke

I thank the witnesses for their presentations and all the work of their various organisations in giving support to people with disabilities. In his presentation, Mr. Brian O'Donnell referred to the education system. One of the issues I have come across over the past few months is the difference between the primary and secondary education systems. While there are a lot of supports at primary school, we are running into difficulty at second level. The same degree of support is not there. What is Mr. O'Donnell's experience of that issue? Is there a deficit in the second level sector, or coming from the Department?

I presume all the organisations represented here will have experience of trying to get a policy change that has been made at national level implemented at local level. There can be resistance to bringing about such change. The witnesses might outline their own difficulties with that. I have come across it quite a bit with a number of organisations, both the health services and local authorities. Even though the policy clearly sets out what road we are going down, implementing it is extremely slow and difficult. For example, we built a brand new facility costing €15 million, and because it was going to bring about some change, we could not get people to move into it for a period of eight or nine months. There was a stand-off over how it would be managed. How can we work more comprehensively with people to get a faster implementation of national policy?

I also want to touch on the role of disability officers in local authorities. Every local authority seems to have a different interpretation of that role. Some believe the disability officer identifies changes that are needed for access to public buildings. Others believe he or she is a reference point for people with disabilities, to help them deal with any issue, whether it be a matter of housing, access to services or access to public buildings. That is my understanding of the role. In Cork, however, I had to refer a number of cases to the Ombudsman because there was a lack of action by a local authority in dealing with disability issues. There was one case in which the parents of a child with intellectual and physical disabilities had received a letter from the local authority in July 2008 that their house needed to be adapted. It was a local authority house. Six years later, no work had been done. Only after the Ombudsman became involved was work done. I do not think anyone should have to go to that stage. The child had severe disability and had to be taken out of bed every morning to be looked after, and was being tube-fed. The parents were providing the care at home. Another State agency was providing housing that was inappropriate. What are the views of the witnesses on how to make the role of disability officers in local authorities more effective? I have raised the matter with the National Disability Authority and have made a number of freedom of information requests to individual local authorities. How can we ensure that the role of the disability officer is fully recognised and that people with disabilities know to contact them in respect of providing services and making changes that are needed?

Mr. Brian O'Donnell

I will respond to the Senator's first question about education. As I outlined in my presentation, our federation very much welcomes the implementation of the new policy for the allocation of special needs teaching resources in mainstream school settings, which will take effect in the autumn of this year. That policy moves away from the need for parents to seek out assessments in order to qualify for educational resources. Instead, the school is profiled in terms of the teaching resources it requires, which is welcome. In respect of secondary schools, the federation welcomes the increase in the number of special needs assistants that have been put in place over past years.

That is a welcome development. However, it is still far from perfect. My colleague, Mr. Christy Lynch, is chief executive of KARE, which is a patron of schools. Mr. Lynch will deal with the practical difficulties KARE encounters as a patron of schools.

Mr. Christy Lynch

I thank Deputies for the opportunity to be here. I will make a general point that arises from a number of the questions on the convention. Another point relates to special schools. In the past, most children with intellectual disabilities went to special schools. Thankfully, that has changed over the years. Special schools remain national schools even though children stay there up to the age of 18 years. They follow the national school curriculum up to the age of 18 years. There has always been a view that that the national curriculum is fine when it comes to intellectual disability. Of course it is not fine. A child with intellectual disability should transition, like any other child, from primary to secondary level.

Let us consider the history of inclusive education in this country. Much progress has been made and much good work has been done over the years. We should acknowledge that. However, it was very much focused on primary schools. Issues have arisen when we come to secondary school. This is not an excuse not to do it; we should absolutely promote full inclusion at second level. At second level children are not with one teacher but with seven or eight teachers rotating throughout the school. I was deputy chairperson of the National Council for Special Education twice. Therefore, I know this was one of the issues the council was considering at the time. Secondary schools, like national schools, when this issue arose, were resistant. They made arguments about how they would be unable to do it, how children would not cope and how there was too much change in the day. We know from the evidence that is simply not true. We simply need to provide the levels of support that children require to be able to fully participate at second level.

I am not currently involved with the National Council for Special Education but I believe it might be useful for the committee to ask the council to comment on the issue in respect of the progress made in the area.

I will offer some general points on the questions. The convention is a paradigm shift in the area of disability. It is a completely different lens through which we will approach the disability issue. It amounts to moving away from medical models and models generally towards full participation and equality and rights. It is a foundation for us to build on. There are many things that we have done well but it is a foundation that we can build on.

Reference was made to the question of delay. I maintain that we have excellent policy in this country. I do a good deal of international work. I was involved in putting some of the policy together. We looked to Australia, Canada, USA and anywhere we could find best practice examples to incorporate into the policy in Ireland. However, we did it at a time of absolute austerity. The riders that kept coming on the policy all held that it must be budget neutral. The fact is that people's rights and respecting people's rights is not always budget neutral. People with disabilities have paid too big a price. The convention and the ratification of the convention would represent a statement by Government to the effect that it is committed to it and that it will do it.

One of the arguments for why we have taken so long – I have heard this from previous Ministers – was that when we ratify it we will take our responsibilities seriously as a State and commit to it. What that means is that we put up our money and start to identify the areas and the questions being asked with regard to how we catch up. There are areas where we have done well but there are other areas where we need to catch up. We cannot do that on a budget neutral basis.

The question of whether we need to ratify it has been raised. We do not and we have not done so thus far. We could start and we should start in budget 2018. Whenever we ratify the convention – I hope it will be soon – at least some of the work will have started and will be under way. That would be worth doing.

The difficulty with grey policy – I am quoting my mother here – is that paper never refuses ink. We can write anything down and ratify the convention and clap ourselves on the back for doing it. However, as my colleague pointed out, unless we follow through by implementing the provisions and putting in place the mechanisms to monitor how we are moving it forward, then there is no point. We should not rely on the UN committee. It is great that the committee is in place but we should really take responsibility for our citizens and put right the wrongs of the past.

I will go back to the paradigm shift. This relates to some of the points made. The point about disability officers is a good example. The paradigm shift requires all Departments to revisit the way they address the issue of their responsibilities for people with disabilities. What is the role of county councils? That question was raised by the Senator. The county councils should take responsibility for what county councillors are responsible for. They should do that in a way that respects the rights of people with disabilities, because councils have responsibilities.

I was involved in putting together the comprehensive employment strategy for people with disabilities. We worked with seven Departments. The burning question from every Department was: "Who owns this?" What was behind that question? The view was there was a need to lay it on another body and walk away from it such that each Department would not have to do anything.

The convention does not work that way. It cuts across every aspect of life for people with disabilities, and so it should, because disability affects every aspect of life for citizens with disabilities. The only way we are going to get this right is for everyone in the State to contribute. The Government needs to lead by example. I would encourage the committee to take this back to the Cabinet table and inform the Government that this is a Cabinet issue. It is for the whole of Government. Whenever we get to ratifying or implementing it, we need a whole-of-Government response. Each Department needs to take responsibility for this, take it seriously and implement it. However, we will be unable to do that unless we get back a multi-annual investment programme to put some money behind it.

The convention recognises that all countries are coming from different starting points. We may be one of the last to ratify the convention, but we are far ahead of many countries in terms of what we have done thus far. We still have work to do. My colleague, Professor Gerard Quinn, often says that Rome was not built in a day, but that Rome was built. We will have to identify where we are in that process and what we need to do. Most important, we need to identify how we are going to fund it to put the wrongs of the past right for people with disabilities.

Ms Sarah Lennon

I propose to talk about delay, readiness and what can be done in the meantime. The delay is sending a message. Recently, the Minister of State with responsibility for disabilities said that notwithstanding the fact that we have not ratified the convention, life is still better for people with disabilities in Ireland than in many countries that have ratified it. The answer to that is to call on him to prove it. Let us consider the globe. Here is the list of countries: Bhutan, Cameroon, Chad, Fiji, Kurdistan, Lebanon, Libya, Monaco, Solomon Islands, Saint Lucia, Tonga, USA, Uzbekistan and Ireland. That is it. Everyone else has ratified the convention. They are sending a different message from the message Ireland is sending.

We are contradicting ourselves in terms of our readiness. We have taken a decade to get to the point where we have now clearly signalled our intent to ratify the convention with what we call declarations and reservations. We are not going to ratify the convention entirely anyway. We could have done that a decade ago. We could have put in declarations and reservations ten years ago while getting on with the ratification of the convention in the meantime.

Last week, we had the pleasure of receiving a delegate from Malta at Inclusion Ireland. Rhoda Garland was her name. She works with a disabled persons organisation in Malta. She spoke about the experience of the Maltese. She said that before ratification many people with disabilities did not have a good experience but that ratification had kick-started considerable progress. Malta ratified first and started reforming laws and legislation after that. At that stage Malta had a framework within which to work. The country sought guidance and expertise from other countries about their experiences. She spoke with our self-advocates in Inclusion Ireland. They asked whether they should write to the Minister to suggest that Ireland should ratify the convention. She said "No", but continued that they should write to the Minister and insist that we ratify it. That was a useful way to look at it.

I mentioned that we are going to put in a reservation. This lends itself to the question around the accessibility policy and whether we are ready for it. It is our intention – we have said as much clearly – to put in a reservation relating to reasonable accommodation. In essence, we are going to have different levels of reasonable accommodation depending on who we are talking about. Public employers, for example, providers of public services have a certain standard that applies. This is called the disproportionate burden. However, there is a nominal cost for private services. In essence, it depends on who a person is or what service the person is receiving. If it is a public service, a person will be accommodated to a certain level. However, if it is a private service, the service level will be different. That is not consistent with the UN convention and that is not the experience in most other countries.

We have said it is a constitutional barrier.

Something Inclusion Ireland has sought, and it would be fantastic if this committee could do it, is the publication of the legal advice which says there is a constitutional barrier to that. If there is a constitutional barrier, we should examine ways around it. We are probably tired of referendums but if something could be put in place, such as a funding scheme, to allow private services to reach the higher standard without impeding their private property rights, it would be a practical thing to do in the meantime and would not cost a great deal of money.

Another thing we could do in the interim is borrow from the Maltese model. Malta invested in self-advocacy. It trained self-advocates and worked with people with lived experience of disability. Malta has employed the model that we are proposing, where people with disabilities are involved in the monitoring. Once the convention was ratified those self-advocates were ready to begin the monitoring aspect. That is a practical thing we can do ahead of ratification.

I was asked a specific question about health screening. We can do several things. Obviously, alternative formats that are easy to read and using videos and Braille are important. Another practical course would be for the Minister for Health to publish a public sector duty obligation, that is, what the Department of Health intends to do and setting out a plan for all of the health screenings and health services and what alternative formats the Minister would like his Department to employ. That is something he is required to do under the Irish Human Rights and Equality Act.

A study was carried out in 2009 on screening for breast cancer in post-menopausal women. That study found that one in four people in the sample did not receive breast screening. They were invited and a number of them attended. Of those who did attend, 16% could not be screened for various reasons including fear, discomfort, distress and what was described as an inability to co-operate. The study was putting the blame a little on the participants rather than, perhaps, on the process. One issue that emerged strongly was consent to the treatment. Again, the issue of consent is huge while the Assisted Decision-Making (Capacity) Act is not in place. That study found that people with more profound intellectual disabilities were no less likely to develop breast cancer but were less likely to receive the screening. It is an irresistible mandate for us to fully commence the Assisted Decision-Making (Capacity) Act without further delay.

In terms of there being no new rights under the convention, we work a great deal with self-advocates and they are not looking for new rights. They are looking for the same as everybody else - a job, a family, a roof over their heads and to belong. They come up against unique barriers. People with disabilities do not need new rights, but they need us to respond to their unique barriers. At present, without ratifying the convention we are letting them down.

Ms Kathleen O'Meara

My colleague, Brendan Lennon, will respond to the matter raised by Senator Colm Burke. I will respond to Deputy O'Reilly. The adverse impact of the delay is primarily on people. The Deputy might have seen the demonstration here about a month ago. There was a very good turnout for that. It could have been greater if people were able to travel and so forth. It gave an indication of how people feel. This delay is telling them, in effect, that they are not important. I will not go so far as to say second class citizens, but they are not being treated the same as everybody else. Let us face it, there is already much evidence of that. When the Government says that it is committed to ratifying the convention, that it will do so by the end of 2016 or so and it still has not happened, how are they expected to feel about it? One of the main adverse impacts is on the people themselves.

What difference would it make? It does not open a locked door. However, I point to what my colleagues have mentioned, that ratification represents a real shift to a rights-based approach, rather than a charitable approach. It embeds it strongly there. The legal changes taking place in the legislative programme that must accompany the ratification make a difference. There is the right to health. That is a huge one in health today. There is also housing. How many people with disabilities wish to live in their own home? Many do, but they do not get to do that. Yes, there is a housing crisis across the country but people with disabilities are at the bottom of the list for access to housing. There is the right to employment. The rate of employment among people with disabilities is very low. Again, they are at the bottom of the list. There is much to be done in that area.

One of the big issues is accountability and the UN committee to which the Government must report on what it has and has not done. As we know, we are not great at accountability in this country and sometimes a body outside the country is required to hold the Government to account. That is very welcome as part of the ratification.

Mr. Brendan Lennon

I intended to respond to Senator Colm Burke's query about disability officers in various public services.

Deputy Louise O'Reilly

There is a vote in the Seanad and that is the reason the Senator had to leave.

Mr. Brendan Lennon

That is okay. The role of those disability officers, or access officers as they are called, is determined under the Disability Act. Their role is to facilitate people with disabilities to access the service of that public provider. It is not necessarily to get involved in making decisions about the priority of the individual case but to ensure that the person gets access. The issue is that many public bodies have no access officers in place. In fact, the HSE has only begun doing that work in the last two years. It had to train up to 500 people in that role. That is a considerable piece of work but the fact that it only started nine or ten years after the Act is not understandable.

I wish to comment on Deputy O'Reilly's query about the delay on the UNCRPD, the European Accessibility Act and the role of that Act. I am not too familiar with the European Accessibility Act but I am more familiar with some of the changes that European law and directives have caused. One of them that is quite significant for the deaf or hard of hearing, and I am familiar with that area, is that in a month or two months, a new text relay service is due to be introduced. It will allow people who cannot make voice calls, that is, people who cannot hear or people who cannot speak, make calls in real time via a relay operator. That is being introduced by order of the Commission for Communications Regulation, ComReg, the regulator of telecommunications providers. It is doing so on foot of an EU directive of some years ago. It is an improvement in accessibility that is being driven by EU law.

The other nice aspect to it is that it is a form of paradigm and cultural shift we need. The cost of the service is nominally the burden of the telecommunications providers. In fact, however, they will pass it on to their customers. The person who uses the service pays the normal rate for making the telephone call or transaction, but all of the customers of telecommunications providers will share the cost of providing that service. The paradigm shift is that this is not a cost that a particular sector or budget bears, but is distributed among all of us. It is an ultimate example of mainstreaming, where everybody does not have equal access. Equal access to a telephone is no good to a deaf person but they have equivalent access to the facility.

Chairman

Thank you, Mr. Lennon. I call Senator Dolan.

Deputy Louise O'Reilly

Sorry, Chairman, I put a question to Ms McGuigan.

Ms Caroline McGuigan

I was thinking about it after Deputy O'Reilly asked the question and referred to having more psychiatrists in maternity hospitals.

I have worked for many years with people who have gone through challenging mental health difficulties but they are no different from anyone here today because we are all human beings and we all have our ups and downs. I do not feel that more psychiatrists in maternity hospitals would be of particular benefit, but people's mindset, attitude and culture need to change. I had Conor when I was attending the psychiatric services and the assumptions that are made are unbelievable. A woman who goes into hospital to have a baby brings a record with her and is categorised and spoken to differently. It is fascinating to watch. We need a whole-hospital approach, and for everybody working in a maternity hospital to have the right attitude and mindset. For example, people should not make assumptions nor believe they know what is best for someone else. They should sit down and ask people what is best for them because people know themselves best.

It is horrible to go to a place when one has a psychiatric record. I had one for eight years and it is very instructive to read what people say about someone. If staff have a particular belief system which they carry into the workplace, it needs to be challenged. People should also be upskilled. I am entitled to a choice. If I want to talk to a nurse, a doctor, a psychiatrist or a psychologist I should be allowed to. When I was in psychiatric services, there were some nice people and there were others who should not have been working there. One of my biggest relationships was with Connie, who worked in the kitchen. She had not done her masters in psychiatry but she connected and that what it is all about.

Psychiatry has a very paternalistic approach and people make assumptions that because one has suffered with mental health or has other challenges, one needs a psychiatrist. One may need a good friend or a nice nurse. While advocacy is important, one should not make assumptions about a person who has come far enough in life to be admitted to a hospital to have a child. It is about listening and about giving people a choice. If they happen to want a psychiatrist, that is good. The latter is not, however, the only choice and it is not for everybody.

Dr. Shari McDaid

Maternal mental health has been very neglected partly because A Vision for Change did not speak to it. A review of A Vision for Change needs to keep the good parts and we need to continue the implementation of its good parts while addressing its significant gaps. A Vision for Change does not mention gender even once in its hundreds of pages. It is out of step with the mental health policy we need, which would recognise that there are particular issues for women, men, the LGBT community and everybody else.

A Vision for Change is also not very helpful in the area of dual diagnosis with an addiction or substance misuse issue. It speaks very lightly around the issue of cultural sensitivity to mental health services and does not suggest what this should look like. We have had a lot of conversations about gaps in mental health services but we have huge undercapacity in our primary care system in the context of mental health and that is partly because A Vision for Change did not get specific enough about what primary care for mental health should look like. In the absence of such a policy, what happens? The service provider goes off and does their own thing, or nothing. The HSE responds to criticism but without a policy basis and it may not even respond where a particular focus is not placed on an area.

We need an updating of A Vision for Change. It needs to be a consultative process and to happen quickly. The document specified that a review should happen between seven and ten years after the policy has been published but we are now in the 11th year since A Vision for Change was published so we are overdue. We are looking for the continued implementation of A Vision for Change but also a fairly rapid and pragmatic review which involves consultation with people to address the gaps.

It is not just the policy that needs to be reviewed. The mechanism for implementation must also be reviewed. The HSE has been reconfigured numerous times during the lifetime of A Vision for Change and it is being restructured again at the highest management level. Those of us in mental health reform fought hard for a senior manager in the health service to be designated as responsible for mental health, the national director for mental health whom we now have. However, we are now going to lose that role as it will be combined into a number of other areas. Historically, mental health has persistently suffered from being the Cinderella in the wider health system and it is still under-invested in terms of the overall health budget, with just 6% of that budget going towards mental health care. Mental health has to be visible in the new structures of the HSE and in what comes after the HSE, if we every get beyond it. It has to be designated as having its own space. We are at risk of going backwards to a stage where mental health was not particularly visible and was a soft touch for savings when savings were needed.

Ms Kathryn O'Shea

As a parent of young adults with disabilities I would also like to comment as we are often left out of these discussions. Services are the middlemen so Government should be talking to us and people with disabilities to get the true picture of what it is like out there.

Deputy Murphy O'Mahony said that there is no clear definition in the convention of what a disability is. We should focus on a clear definition of what it is to be a human being as that would be much more beneficial. We still suffer from a misunderstanding that people with disabilities are, somehow, a different type of person and unless we get that basic piece right, we will never get the right conversations going.

Senator Colm Burke spoke about education and there is a real problem here. It is not just about education but a lack of purpose in the HSE and the whole service industry. I wonder if it is the intention that people be educated to get work and live independently or is this just a holding ground and people are educated until they are 18 and then moved into rehabilitative training, RT, or day services? What is the purpose of this? People with disabilities are the objects of these systems and not the subjects and this is a big problem.

There is great policy out there but it is not being implemented. Government designs the policy and passes on the contracts to middlemen for services but it is not happening. Why is it not happening? Do we need to sign the UNCRPD? Probably not. We are not denied rights in legislation - we are just not granted them.

One could say we could assume a right, but good luck with that. It will take a lot of resources but we need to decide. One must be accountable at the end of the day. It is not about another sector in society. I often wonder why everybody from the Government is not represented here because disabilities affect, or should affect, all Departments and not just the health sector. If we do not move it out of the health sector, we will not be able to implement the intention behind the convention either.

Senator John Dolan

I hope the Seanad got on without me.

Senator Colm Burke

We did have a vote there. I apologise for having to leave and I apologise to the speakers for not being here for the reply.

Senator John Dolan

It is odd welcoming people and organisations I know. I acknowledge and am enlivened by the fact that a number of people have spoken from their own experience. I refer to Ms McGuigan and Ms O'Shea, and a man who is not present, Mr. Martin Dooher, and people from Ballina to Cork. That is important. Ms O'Shea came back to that point. It is important to hear from people. You had an experience recently, a Chathaoirligh, in the AV room of listening to the stories of a number of people, which is important. A couple of things struck me. Ms McGuigan made an observation that one might need one of those nice nurses so Nurse Ratchet need not apply any more. It is so important to meet someone who can listen to one in any situation. The question was asked why do we not have everybody from the Government here. That encapsulates where some of this needs to go after today.

Mr. Lynch mentioned education. We have had references to housing, poverty, education, transport, communication, loneliness, social exclusion, the congregated settings, PAs and people in nursing homes. It is very important that we find a way. My colleagues and I cannot deal comprehensively with the very solid submissions that have been made that have knitted a lot of things together. That might be something we as a committee need to think about and come back to the issue of other Departments.

I have a couple of questions on mental health reform. What is the understanding of witnesses about the extent of social exclusion for people living with mental health difficulties? The next question is related. The witnesses mentioned a lot of very practical things that need to happen in the health space. Could they name even two other Departments or areas of the public service that need to get their act together in order to make a critical and complementary improvement to people with mental health needs?

I have a couple of other questions which I will not direct at anyone in particular. This is a provocative question. In the past, have we given too much responsibility to the Department of Health for the lives of people with disabilities or has the Department in a sense, just picked up stuff it should not have picked up that rightly belongs elsewhere?

Community living and making that work was clear across the various submissions. I wish to go beyond the area of health, although witnesses can mention things in that regard as well. What actions in other public service domains would help to move people back into their rightful space in their communities and keep them there? They are the specific questions. I have many others but I will not get into them as I would be here all day. We need to find a way to tidy up the loose ends. A richness and synergy was evident in the presentations today that I have not seen come across too often. We must find a way to go beyond this stage. We will have some other discussions next week. I again thank all the witnesses.

Chairman

I have a number of questions from my own point of view. Would someone like to refer to personalised budgets and how they might be progressed? From my experience in general practice, parents and patients have expressed the view that they could get much better value for money. They said if they looked after their own budget they could choose their own services and have services delivered much more conveniently and cost effectively.

I have encountered problems where adolescents transitioned to adulthood and there was a lack of respite services available to them or there was difficulty in accessing respite services. When we were discussing the ratification of the UN Convention on the Rights of Persons with Disabilities in the Dáil, not all the provisions of the Act were available to us. We were told they would be delivered on Committee Stage. One of the areas concerned accommodation. Mr. Lennon referred to that issue but perhaps he could outline it again.

I also have a question for Dr. McDaid. There were 172 recommendations in the review of the Mental Health Act 2001. We dealt with one a few weeks ago in respect of Deputy Browne's Bill. Could Dr. McDaid indicate three of the priority issues among the 172?

Dr. Shari McDaid

I thank Senator Dolan for his question about the extent of social exclusion. We did not get a chance in our very brief opening statement to look at the whole area of social exclusion - or let us say social inclusion - of people who have experience of a mental health difficulty.

We talk about people who have experience of a mental health difficulty because just having had a diagnosis of a mental health issue can result in social exclusion. It can result in a different ability to get a job and different opportunities for getting work so there is a risk right away, long before it might be a disabling condition never mind if it is an ongoing condition. Let us be honest - if one has a diagnosis of something like schizophrenia and one tries to get a job, one will be very hard-pressed to find an employer who will be completely open to employing one, once one discloses the diagnosis. That has to change radically. People who have a mental health diagnosis have an equal right to work in this country but that right is not fulfilled despite the anti-discrimination legislation we have.

About half of people who are on disability allowances say their primary disability is a mental health difficulty. The extent of difficulties in terms of poverty and social exclusion – essentially living outside the norms of society – is widespread among people who have a disabling mental health condition. About 80% are not working, about half want to work and there is not really any good reason that people with a mental health difficulty should not be able to participate. As for what could be done, to begin with, the Department of Social Protection could make it much easier for people to risk taking up work if they are on disability and be able to know with absolute confidence that they can get back on benefits without any worry.

Some would say that they should be able to retain their benefits while they try work and then go back onto benefits if it does not work out, because mental health difficulties are episodic and the stress and strain of trying work after many years out of work itself can precipitate a potential relapse. We need to be able to have a much more flexible benefits system, one that provides people with the real reassurance that they can try numerous times to get a job and that if it does not work out they have the absolute assurance that they can have their full benefits back.

The area of housing is absolutely key to recovery from a mental health difficulty. It is very hard to recover from a mental health difficulty when one is in an unstable housing situation. We also know that there is a high proportion of people in long-stay psychiatric units who are there because there is a housing need. They do not need to be in a psychiatric unit but they need a place to live. It happens that they end up in a psychiatric unit and then there is difficulty in getting them housing. The housing crisis has a direct impact on people's ability to avail of their rights to autonomy and dignity and living independently in the community. There are specific things that the Department of Communications, Climate Action and Environment can do. We have asked it, along with the Department of Health, to look at funding tenancy sustainment support for people who are living in the community with a severe mental health difficulty and who need that type of support. They do not necessarily need a nurse to visit them regularly but they do need someone to be in touch regularly to make sure that they are able to maintain their housing situation and help to broker any issues that arise. That needs to be progressed. It has been discussed for quite some time. It needs to be implemented.

The education system is key to preventing mental health difficulties by teaching children at a very, very young age, from the first years of primary school up, how to cope with their emotions and conflict and stress and how to look after their mental health and reach out for help when they are feeling that they cannot cope. The Department of Education and Skills is making some good steps in that regard. We have seen attempts to implement a junior cycle curriculum which has mental health as a core subject matter. Schools are being supported to do that. However, we have to see it feature in every school. It must be the ambition that every child has that kind of exposure to mental health awareness and education on how to look after themselves from early childhood. That makes it everybody's business, and the school system is a key starting point for that.

I was asked what could be done regarding some of the recommendations about the Mental Health Act beyond what is in the amendment Bill. One of the key recommendations is advanced directives. It is really not tolerable that people who have a mental health diagnosis and who end up in hospital because of that cannot set out in writing the things that they want or do not want when they are in hospital and have that respected and know for sure that, by law, it will be respected. That is the situation we have. It is clearly discriminatory under the Assisted Decision-Making (Capacity) Act 2015, and the Mental Health (Amendment) Bill as it stands does not rectify that. It needs to be rectified. There are also issues in terms of children aged 16 and 17 who under the Mental Health (Amendment) Act are not allowed to have a voice in consenting to their own treatment. Unlike physical health care decisions there is a different age of consent in the Mental Health (Amendment) Act of 18 years old. That is also discriminatory.

We feel that it is very important to introduce a statutory right to advocacy. Every person who has to be in hospital for mental health treatment should have a right to access an advocate who can help to support them and make sure that their voice is heard in the process of treatment decision-making and admission decision-making as well.

Mr. Christy Lynch

I will take some of Senator Dolan's questions and then respond to the Chair's questions. The Senator asked whether we have relied too much on health. We absolutely have, without question. We understand the reason for that, because if we look back at the history of disability it comes out of the medical model. While those of us in the sector would like to think that we are out of the medical model we absolutely are not. It is still alive and well in the country and plays out in all kinds of ways in the lives of people with disabilities.

To give an example, without naming names, I stood not far from this room and spoke to a Minister a while ago about the area that that Minister has absolute responsibility for and he said that I should speak to the Minister for Health. I did not have to talk to the Minister for Health. I went to a meeting of the Department of Social Protection with the Irish Association of Supported Employment, which is the only national body dedicated to the employment of people with disabilities. I was the founder so I am biased, but employment has been mentioned by everybody. It was seeking funding for a core grant to keep their core staff in place. It did not get it and so it had to let its core staff go. It was told to go and talk to the HSE. I said that I deal with the HSE every day in my job as a service provider and asked why I would ask the health service to fund the employment of people with disabilities. It makes absolutely no sense. The medical model is alive and well, and to answer Senator Dolan's question, yes, we have relied too heavily on health.

The Senator also asked if it might make a difference if the two things came together. I ran the national project on congregated settings and therefore wrote the report. The Department that I met most regularly while we were doing that was the Department of the Environment, Community and Local Government. I remember going into a room and saying that we should add 4,200 people to the housing waiting list because that is how many are living in institutional settings who need to move out. We are way behind on the implementation of that report. The debate at the time was whether we recommend a five-year implementation or a ten-year implementation. In good Irish fashion we went for a seven-year implementation. That would mean that next year it would be completed. It is far from being completed, and as a colleague has said, a target - which is a very, very low target in terms of this programme for Government - will be reached not because we have done a great job but because people pass away. It is a bad indictment on all of us if that is our commitment to this issue.

Why, when we have the largest social housing budget in the history of the State, is the health service putting €20 million per year into providing housing to move people out of congregated settings? We badly need that funding in other areas. There has been no capital funding for New Directions, which is the day service policy, for many years, and for all kinds of things that the health service is responsible for. The answer is because of the lack of commitment in one Department which is responsible for housing to dedicate the required amount of money. They have dedicated some money and it has improved a little, but I do not understand why health is funding housing. It is not the responsibility of the Department of Health. The money is badly needed within the health budget. Please do not take from that that I am suggesting that the budget be removed. I am answering Senator Dolan's question about what could help. There is no point in providing the housing if the support and staffing for people to live in the housing, the supports they need to live their lives, are not also provided. That is one example, and there are many others, that will come together.

On the question of personalised budgets I am actually chairing the task force established by Government on that issue. It is great that there is a commitment in the programme to getting this done. When the Minister asked me to do it I said that the issue had been talked to death. We had been talking about individualised and personalised budgets for 20 years. The task force is working very hard and there are many people involved. We have every intention of meeting the deadline, which is to bring recommendations back to the Minister by the end of this year, and our work plan is on the Department's website for anyone who wants to see it. One of the challenges here is the level of expectation. There are people who think that it is as simple as getting the money and providing better value, and other people who think it is too complicated. It is taxpayers' money. We are trying to find a middle ground which gives people much more choice and much more control, but also to balance the governance requirement.

We all know that governance is a big issue, and rightly so, but it has to be proportionate. If I get a personalised budget of €10,000 or €15,000 versus one of €250,000, then the governance of that should be proportionate.

The other question is adequacy. We are looking and have looked all over the world. I am not sure that giving me a personalised budget to live my life, instead of giving it to a service provider, when it is not enough money for either, goes very far. Speaking personally, I have told the group that if, ultimately, we come up with a system of personalised budgets that forces individuals back into what might be described as traditional services, we will have done a very poor job. Hopefully, that will not be the case.

The final question, which is very important, relates to respite services. I encourage the committee to look back at whatever small allocations have been made to disabilities over those years. They will find that almost all of it went to progressing children's services, for therapy - and we need more of that - and the other area which was focused on was school leavers - again, we have to provide for young people coming out of school into adult services - but nothing else. We have repeated the mistakes we made in the 1980s. I understand the situation that the country was in but there was no investment in respite care and we have allowed the waiting list for residential care for people with disabilities to grow and grow. A father contacted me yesterday. He was at his wits' end after spending two years going round the houses to Deputies and all kinds of people. He is a lone parent and has a profoundly handicapped son and is at the end of his tether. I had to tell him that unless he was in an absolute emergency, he did not have a hope because there is no budget, not even for emergencies, but emergencies have to be dealt with. The knock-on effect of that, to answer the question, is there have been no new respite services. It is common sense. More children are being born every year, they are coming into the system, adults are living longer - thankfully - partly due to better provision and health care and so on, and with no expansion of the respite services, the numbers are continually growing, and whatever the number of places, the numbers trying to use them are growing all the time.

As providers, we all see families in crisis who are not getting anything like the level of respite they need. We know they will become the emergencies. A vicious circle operates here because there is no planning for emergencies, which brings me back to the need for multi-annual investment programmes in order that we can plan. Because there is no planning for residential services, emergencies happen. I am chairing a respite review committee at the moment in CHO 7. One provider has five respite beds blocked. The reason is because people came into respite, they cannot go home and there is nothing else. The lack of planning in residential services has a direct bearing on respite. The reason the federation is calling for a multi-annual investment programme is that there is no point in only dealing with school leavers. It is going back to the convention, it is talking about all aspects of people's lives. We have got to put up the money to take this seriously and correct the wrongs of the past and put right the fact that people with disabilities have paid too high a price through the austerity years. This is well documented. I have heard Senator John Dolan speak about it on many occasions. It is a fact; it is not someone's opinion. There is an onus on us to address the needs of some of the most vulnerable people in our society and so many parents, and not all of them are older parents. The parent I was talking to would not fall into the older category but he struggles every day and is being pushed from pillar to post. This has to stop and the only way that will stop is if we plan properly and invest properly.

Chairman

I thank Mr. Lynch for that passionate response.

Ms Sarah Lennon

On the last point, respite is an area that Inclusion Ireland hears about a lot. Through our community engagement we hear a lot about the need for respite and people in crisis. The question we have about it is why are we talking about respite at all? Why are we using that language and why are we talking about respite as a break? What it comes back to is that we must always have regard to the vision the convention sets out for us, which is of individuals with disabilities living their own lives, as the rest of us tend to do when we grow up. We leave home, we found our own family and we live in our own house in the community. If we are talking in the language of respite, burden and crisis, we are doing something very badly wrong from the start. That is not to suggest for a moment that people are not experiencing crisis situations, but if we just put respite places in place without looking at why we are having this conversation, then we will be stuck in a perpetual cycle.

On health and the Department of Health and whether it just picked it up, it comes back to a lot of public services being provided by the Department of Health or through the religious orders. With disability services, there is both. If we are talking about a medical model, we are also talking about a charity model. A consultation is going on as part of the comprehensive employment strategy for people with disabilities and, speaking from memory, the Departments involved are Health, Social Protection, Education and Skills along with the HSE. The critical Department, the Department of Jobs, Enterprise and Innovation, is not involved in this consultation. Why are we having a consultation on employment strategies without the Department of Jobs, Enterprise and Innovation being involved? It goes back to the fact that we are not serious about this. We are not genuinely trying to create workplace environments for disabled people, we are talking about how we rehabilitate people so that they are ready to go to work.

On community living, it is not just about bricks and mortar, although in Ireland bricks and mortar is a pretty big problem. It is not just about being there and being in the community, it is about community inclusion. The work of the task force is ongoing and we wait, I almost said with trepidation but anticipation is probably the right word. There would be very little point in us designing a personal budgets model if it simply allows people the choice they would have had anyway. That point has been well made but it is worth reiterating. One thing for which Inclusion Ireland has asked repeatedly was for service providers to sign up to having between 8% and 15% of their budgets, which are provided by the HSE through a service level agreement, to be ring-fenced for individualised and community based models of supports. In 2015, 22 service providers did so. What we were looking for was the buy-in. More than that, Inclusion Ireland would like to see an independent commissioning agency in order that where services are being commissioned, that would be done on an independent basis.

I refer to the Disability (Miscellaneous Provisions) Bill as the mopping-up Bill, as it has the bits and pieces that we have identified that we need to do before we can ratify the convention. There are lots of problems with it but one critical issue, which was raised here, pertains to "reasonable accommodation", which is a pretty central part of the convention. It is regrettable that we have said that we will enter a reservation. We have said that essentially, we will allow people with disabilities to be reasonably accommodated in certain places. If it is school we may allow them to bring in a service dog, we might allow them to have some sort of support but if they are accessing a private service, unless it only has a nominal cost to the service provider, they are not entitled to it, that is, that discrimination does not take place unless it is simply a nominal cost. That is not the standard of the convention. The convention asks us to reach a disproportionate burden standard. The point is being made that there is a constitutional right to private property with which the State cannot interfere. Inclusion Ireland does not believe that is necessarily true. There is obviously a constitutional right but it can be overcome in the public interest. We can make a compulsory purchase order for land, if we think it is in the public interest, and we would like to see some vision and leadership from the Government on this issue and to say that it is clearly in the public interest for all services, whether private or public, should be subject to reasonable accommodation provision. That is something that is in the public interest. The other thing, which I will touch on briefly although I could talk about it for a while, is that this Bill is from the Department of Justice and Equality but part of it has been given to the Department of Health to develop the deprivation of liberty safeguards. There has been no consultation on that part of the Bill. It is proposed that those provisions will be put forward at Committee Stage with no consultation and that is completely inappropriate and wrong.

The deprivation of liberty is a serious matter. These are people who are de facto being deprived of their liberty, that is not in the legal sense; I am talking about people who are in institutional care or nursing home care who are monitored 24 hours per day, who are scrutinised and observed and who are not free to leave, by any reasonable measurement. They are being deprived of their liberty. Ireland has no safeguards in place for when a person lacks the capacity to choose. It is wrong to proceed to Committee Stage on this very serious issue without any meaningful consultation and this needs to be addressed as a matter of urgency.

Ms Kathleen O'Meara

I will take up on the point about the Disability (Miscellaneous Provisions) Bill. I agree totally with Ms Lennon's comments on this and around the other missing pieces of the Bill. It is by no means a complete piece of legislation. The feeling is that it was produced under pressure and while the pressure was the right pressure, the Bill is by no means complete. The removal of the term "unsound mind", for instance, is not provided for in the Bill and we hope this will be rectified and corrected when the Bill returns for consideration.

On the issue of whether we have given over too much responsibility I believe Senator Dolan was, obviously, bouncing a soft ball to us. I totally agree with my colleagues' comments in this regard.

Reference was made to personalised budgets and respite for adults. I shall rely a little bit on some anecdotal stories. A colleague of mine has said that personalised budgets would never happen because the HSE will not give up control of the money. That is all I will say on this. It has to happen because at the core is independence and choice. At the core is transfer of power to the person and this is critically important, apart from the point made by the Chairman on value for money. It has to happen but there is a road yet to travel on this issue.

With regard to respite for adults, a few weeks ago a story came my way about elderly parents with a son who has an intellectual disability. He had lived all his life with his parents, both of whom are in their older years and who, unfortunately and at nearly the same time, had fallen ill. It left a situation where the son, in his 40s who had always lived at home cared for by his parents, could have lived independently with support but the only place for him was a nursing home. He went into a nursing home where he lives with people who are much older than him and who are not like him. It is not his family home anymore and he is surrounded by people who are dying. It is an entirely inappropriate situation for him and is, in many ways, inhuman to do that to someone. It is, however, not that unusual. This is why Rehab is looking at the potential to develop respite places. I do not mean respite for four or five years, I mean respite for a short period of time and how it could actually be provided as part of the services we make available.

Senator John Dolan

In Ms O'Meara's submission to the committee she spoke of young people going in to nursing homes. It seems to resonate with the point she has just made.

Ms Kathleen O'Meara

Yes. That is part of it and exactly the point.

Senator John Dolan

There are more than 1,000 people now. We have heard how there are efforts to remove people from congregated settings who have spent all their lives in them yet we have the same organisation, the HSE, being comfortable with allowing people go in to residential facilities who had never been in them and who possibly do not need to be in them.

Ms Kathleen O'Meara

It is possibly confusing the issue. When we consider, on the one hand, the individual who has a disability as having equal rights as a citizen and on the other hand we consider carers' needs they are two separate issues. I am not sure that the same service provider can meet the needs correctly. It is almost a divided loyalty in some ways. One is either trying to support the individual who has a disability and separately to support the carers who have needs. These two aspects need to be kept very separate for the purposes of clarity.

Deputy Pat Buckley

I am not a member of this committee but I came today as an observer. My brief within Leinster House is on mental health, about which I am very passionate. I worry about one or two things but first I congratulate the witnesses on their honesty and frankness. We need to know these things so we can react. It aggrieves me why disability issues always have to come under the HSE and Senator Dolan touched on this. These people are not sick people and the matter is about equality. This is my beef, regardless of who is in power. Governments have a responsibility to treat everybody equally and they do not. In my own experience in the mental health side of things people who are labelled, for example, as disabled, should never be labelled in that way. It stigmatises them straight away and puts them under pressure. When a person is not getting equality it is bound to affect his or her mental health. I shall give the committee a perfect, simple example of this. Some years ago in my town we repaired and put down some new footpaths. We did our research beforehand. We had not realised the difficulties until we received a submission from a wheelchair user, who was related to me, and he gave his rendition of how difficult it was for him to go from one side of the town to the other and to do simple things like crossing the road to the post office. When we got the information back it was amazing. The project went on to win a mobility award. My point is that the honesty of the witnesses does not go unheard; we do take things back. I have learned so much just from listening to the representatives today. I must congratulate them, but my biggest gripe - and my own personal view - is that the HSE should have nothing to do with disability services. There is a convention on human rights for people with disabilities and there are other laws that should be implemented. I wish the representatives the very best of luck. I shall return and do my homework to see what I can do in order to be of benefit to them. I congratulate them on their work.

Deputy Bernard J. Durkan

My apologies for an earlier absence as I was in the Chamber for questions. I did not get them all but I got 50%, which is a reasonable enough innings in this business. I thank the witnesses for their presentations, the combination of which is an all-round addressing of the issues affecting people who have special needs and who have a disability. I thank the witnesses for their work in the field over the years.

Inclusion Ireland's name speaks for itself. Inclusion is a very important word in the context of people who have a disability, whatever the disability may be. It is always of great benefit to them to feel they are being included as opposed to feeling another response. Notwithstanding the difficulties the State had to face over the past eight years, it was a really awful problem. There were no resources, no matter where one came from. At every corner there was somebody tugging at resources that had diminished and gone down the drain. It was an appalling situation and all credit is due to the organisations that cover disability, voluntary and statutory, for managing to come through that awful period. They were not unscathed but they survived it and that is important.

My colleague raised the question about young people in nursing homes. This continues to be the case and I do not know why. Some of us have concerns around decongregation. We know from previous experience that decongregation works well, in theory, as long as one has an alternative place and there are sufficient resources for the location to meet the developmental needs of the people going there. Those developmental needs vary considerably, depending on the age of the people and their abilities to fend for themselves to become self-sufficient.

I have always held the view that any person, whether he or she is able-bodied or has a disability, has a contribution to make to the economic and social well-being of the community. People do this by being provided with the facilities to use their own resources in terms of participation and involvement. I strongly support the concept of enabling people to participate. All the groups here have done that all along. Maximising the potential of the individual to the best of his or her ability is the simple, short answer. As long as it remains the objective, it will succeed.

I am a little concerned about decongregation. Different people may have various reasons for supporting it. What this committee has expressed concerns about in the past is the fact that organisations appear to be distancing themselves from participation in the provision of accommodation in congregated settings. A number of them appear to be that way inclined. I do not want to go too much into detail lest I set off a scare but, as the Chairman knows, we have addressed the issue previously. There is some evidence to suggest that the removal of some service providers will leave a void that cannot be filled in its entirety in the normal course of events through the provision of alternatives. I am still concerned about it. Decongregation took place many years ago in the bigger mental hospitals and it did not work to the extent we thought it would because some people, who had been institutionalised over a long number of years, found it difficult to adapt to the new settings. The necessary supports to enable them to adapt to those settings were not in place. It is the same as discharging from hospital a person who was injured as a result of an accident or who had a mental breakdown before he or she is ready to go back into the community and cater for himself or herself again. I would like to be reassured on that point. I am not so happy about what happened in the 1980s when people were displaced from the mental institutions. We agreed that those institutions were not suitable places; they were appalling. There were young kids in similar situations along with much older people. They were appalling places. When we set out to improve their situation and their conditions, we need to do it in a methodical way that is fully supportive and takes account of all the possibilities that may arise in the event of that change taking place. Concerns have been expressed in the House by many people from all over the country. It is not the concept of decongregation we are concerned about but its effect on the individual.

Chairman

We interrupted Mr. Lynch on the previous occasion.

Mr. Christy Lynch

I will address the last point first. I could talk about it all day but the committee does not have all day. I managed the national project on moving on from congregated settings. I am the author of the report. I have a fair level of knowledge. It is clearly a burning issue for a number of Members of the House, not only those on the committee. If the committee wants me to come back at some point in that capacity, I would be happy to do that. I am now chairing the task force and I will come back to a comment that was made on it. If one takes personalised budgets as an example and goes looking at the data and the evidence, there are examples but we do not have what I would call a robust body of empirical data and evidence. We have lots of examples of successes and it is definitely something that should be and will be available to people. That is in contrast to the congregated settings report which contains four decades of data and evidence of different things people have tried. I am not giving my opinion here. The evidence is when it is done properly, the effect on quality of life of moving people into community-based services, in keeping with Article 19 of the Convention, is much better on every measure. The measure of success of our efforts to decongregate our institutions should not be how many people left and went through the gates; it should be the level of community connectedness of the individuals after they have moved into the community. We should ask what their quality of life is. We have to get it down to the impact on individuals. We have lots of success stories of people who have moved in recent years and who have transformed their lives because it was done well. My colleague alluded to one of them. Having been involved in it, people talk to me about examples where it has not been done well and families were not fully involved. If one reads the report, a lot of time and effort was taken to give guidance on how to do it well. I will leave it at that.

With regard to personalised budgets, there was a comment made to the effect that the HSE will never give up control. My response to that is this is not a HSE committee. It is not a HSE task force. There are, from memory, two people out of 50 involved. It is a commitment in the programme of this Government. We have been given a task, which we will deliver on. The Government will decide whether to implement the recommendations of the task force. The job of the HSE, the last time I checked, was to execute the policy Government signs off on. I have spoken directly to the Minister, Deputy Harris, and I have spoken a lot to the Minister of State, Deputy Finian McGrath, and I assure the committee that there is an absolute commitment on the part of both to get this done and to do it well. The one thing they keep stressing is that there should be more choice and more control for people with disabilities. We need to do that.

I agree with what has been said on the issue of carers. As we are a provider, my staff often ask who our primary customer is. Is it the adult with an intellectual disability? With the passing of the capacity legislation, it will become a bigger issue for providers. One of the issues is if mom - it is often mom, but it can be mom or dad - is sitting there saying "I do not want this to happen," but a 25 year old or 30 year old man or woman is saying "This is my life and I want you to support me to do this." We have those challenges today and they will be accentuated in many ways when the capacity legislation is commenced.

I will link the nursing home issue back to congregated settings. I am working from memory but I think we have a recommendation in the report, which was published in 2011, that the issue should be looked at. When I started doing the work, I met the Health Research Board, HRB, to look at where the congregated settings were and who was within scope. The project was to look at people with intellectual and physical disabilities. Of the 4,200 people, only about 300 had physical disabilities. When I looked at the list in the HRB, I was quite shocked because there were one or two people in nursing homes the length and breadth of the country who were young and had particular conditions. They were there because there was nowhere else and not because it is where they should be or what they needed. It is an indictment of all of us. It was 2008 when we started the work. Almost ten years later it is still an issue that needs to be addressed. It is one that has been around for an awful long time and something needs to be done about it. Perhaps it is something the committee could address.

Ms Kathleen O'Meara

I thank Deputy Durkan. On the decongregation issue, I hear exactly what the Deputy is saying. It is not new. As a major provider and an organisation working on decongregation every day of the week, we hear what the Deputy is saying. I reiterate what has already been said. What is success? Success is for the person. It is where the person is happy, fully expressed in their life and fully part of the community. It cannot be done quickly and it should not be done quickly. It has to be done with full consultation with everybody involved.

Mr. Brendan Lennon

I will respond to Deputy Buckley's comment on the impact of making footpaths accessible in his local town and how that improved not just the health but the general quality of life and well-being of some individuals. If we do not have a real understanding and a paradigm and cultural shift right across Government on these things, it will not work. When the footpath gets broken and is not repaired by the local authority, it cannot be used.

If the Garda allows people to park on the footpath, it will not be of any use. If the State continues to block progress, as was recently done in regard to Robert Sinnott, a blind man, it will not work. Mr. Sinnott brought a case to the High Court, the judgment in which was delivered at the end of March. He asked to be allowed vote in secret and without the assistance of a polling officer. That would be a relatively simple and inexpensive measure to implement. It is directly referenced in the UN Convention on the Rights of Persons with Disabilities, UNCRPD. The case went on for several years. Three days before the final hearing in the High Court, the Minister introduced regulations to allow blind people to vote in secret without the assistance of a polling officer. That was only done where the Minister and the Attorney General, who was a co-defendant, were facing the abyss.

The same thing is being done if we are saying that we are committed to the UNCRPD but are only looking at issues at the last moment or trying to cut back on commitments in new legislation that would be consistent with the UNCRPD such as the Recognition of Irish Sign Language for the Deaf Community Bill which is currently before the Seanad. A provision in the original Bill that would allow deaf people to access private services, such as those that were earlier discussed, is being ripped out even though it is totally consistent with the provisions of the UNCRPD to enhance the health and well-being of all citizens, including those with disabilities, by allowing them to participate and removing barriers, a step which would ultimately negate the need for a definition of disability and a label of disability.

Ms Caroline McGuigan

I thank Senator Dolan. It is very important to me that he recognised what it takes for someone to come in and talk from a personal point of view. It is not for the faint-hearted and there are not many people who will do it. I understand why. His comment meant a huge amount to me.

When one has lived through some of the issues we are discussing today, it is a different ball game. Deputy Durkan talked about transition and coming out of institutions. To add to what Dr. McDaid said, we know that connection, meaning and purpose are safety factors in life. If we go back to basics - which I find works well for me in life because otherwise I get a little lost but can find my way again - about exclusion, work and education, all Departments have to be involved. It is not rocket science. Common sense tends to leave the building from time to time, and I mean all buildings, not just this one. That is what worked for me and got me back on track. It took me a long time to get back into the workplace. That in itself is a whole journey.

I was very struck by what Ms O'Shea said about listening to the voices of different people and about money and recovery. It was so heartfelt. We need to drive our own recovery. We need to remember that, as human beings, we are capable of that and we will choose the supports that we need around us.

Dr. McDaid mentioned advance directives in discussion with the Chairman. I feel very passionately about these. I work every day. I am very blessed and privileged to work with people who are going through tough times. There are families, fathers, mothers or brothers or sisters. I ask people what they feel when they are well. They know themselves best and therefore I ask them what their triggers in life are and what action plans they can put in place. Imagine if every one of us, including doctors, nurses, mothers and fathers all had that type of plan. It would take the burden of taking responsibility for other people off many of us. I do not want anyone to take responsibility for me. I will do that and tap into support as needed.

I agree with Deputy Durkan that the closure of the dreadful psychiatric services was horrific as it gave nobody a pathway to connect back into society. If a person has meaning and purpose in life he or she has a far better chance of having good mental health, relationships, a job and being able to manage his or her bills. To tell people simply to leave institutions in which for many years they had been told what to do does not work. We have the answers. I mean this in the most respectful way: it is not that complicated. We need to listen to people who are going through it.

Mr. Brian O'Donnell

To follow up on the last speaker and in regard to what was said by Deputy Durkan, it is worth repeating the life story of Martin Dooher, the man who gave his permission for us to speak of his life story. He epitomises all that we have talked about here through the course of his life. As a young child, he lived in a congregated setting and through his life went through all the transitions and now at 65 years of age has his own tenancy and is living in a community. He epitomises much of what we are talking about in terms of ratification of the UNCRPD because he is living a very fulfilled life and is very actively involved in his community. It is worth repeating his story because he is an inspiration for others to follow and is an exemplar of a success story in his lived experience.

Ms Sarah Lennon

Deputy Durkan raised a very important point on decongregation. It is dangerous but it cannot be an ideology. He has asked for reassurance. There is much we can do but we cannot reassure about everything because there is risk to living in the community. Every one of us experiences risk on a daily basis but there is a huge dignity to that risk. In some ways, the unpleasant aspects of the community have to be part of a development process for people, albeit we have to remember that there are people who have been in institutional care for 40, 50, 60 years or more to whom we have a huge responsibility. That is an important point. We have contributed to their disability and we have to remember our responsibility to them.

The UNCRPD defines an institution as promoting isolation, segregation, lack of control, lack of choice, rigidity, identical activities and being under authority and paternalism. In terms of risk and reassurance, if that is the alternative, then how bad can the community be? Statistics show that 150 people moved out in 2015, 27 of whom went to nursing homes. Some 53% moved in with four or more people and only 9%, or about 14 people, moved into their own accommodation.

Although I do not want to throw the cat among the pigeons and we still have work to do in terms of the 2,600 people still in an institution today, the next conversation we need to have is in the context of group homes and houses where four or five people live with people who they did not necessarily choose to live with or who are not their family. I mean family in the broadest sense, including people who might want to start a family or have a partner of their own. The Committee on the Rights of Persons with Disabilities has defined a smaller group home as an institution if it fits the definition of one. It is not about how many people reside there. We spoke about ten people or more for a congregated setting in Ireland but the Committee on the Rights of Persons with Disabilities is very clear that it does not matter how many people live in the property, rather, if it meets its definition of an institution then that is what it is. We need to bear in mind that as we move past congregated settings, the use of community group homes will have to come under scrutiny.

Deputy Pat Buckley

What is Ms Lennon's view of sheltered housing in that context?

Ms Sarah Lennon

It does not matter what type of housing it is. If repetitive scrutiny, supervision, paternalism and such aspects are part of the package, then, by definition of the Committee on the Rights of Persons with Disabilities, it is an institution.

Dr. Shari McDaid

To respond to Deputy Durkan's point about decongregation in the context of mental health, successive mental health policies have advocated for community care, but nobody has named it as what it really is, which is family care. One reason we need to review A Vision for Change is that we need to recognise the substantial role that families play in supporting people to live independently in the community and to describe that role and the supports that families need to fulfil that role. That also means that we need to understand more about the role that local community groups play in supporting people's recovery and value, to quantify that role and make sure that it is specified as clearly as we have specified the numbers of psychiatrists, nurses, social workers, occupational therapists and psychologists that we need. That is one aspect of it.

The only other thing I want to say about the ratification of the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, is that the biggest difficulty that this country has had is in implementing things. If the UNCRPD is ratified, the real challenge will be to implement its aspirations and to implement what it means. That means having clear plans for implementation. We have had a roadmap to ratification, but we actually need a roadmap for implementation. We have a starting point. We were supposed to have an updated implementation plan for the national disability strategy, which is sadly not visible, though many of us have been involved in inputting into what we hope it will look like. There is an urgent need to publish the implementation plan for the UNCRPD, to resource that implementation plan and have dedicated capacity to drive the implementation of the UNCRPD.

Mr. Christy Lynch

On the issue of the number of people and whom they live with, I think the Disability Federation of Ireland published a report some years ago called "Locked Up at Home". That was about people with disabilities who have their own homes, but because they do not have the supports they need to get out of those houses, they are effectively not able to live the life that they need to and to participate and do all of the things that the convention talks about. I think the number is important and we deliberated long and hard about putting the number at no more than four. I always say the strapline for the report is no more than four. One can argue whether it should be five or three, but we went with no more than four. I am giving evidence here in the form of empirical data. The reason for that - going back to the UNCRPD definition of institution - is that when one goes to five, six, seven or eight, the chances of meeting the criteria outlined increase. The number is very important. What we say in the report is that we should be looking at all kinds of things, but if there is going to be shared living, people should choose who they live with, as the convention says, but there should never be more than four people in one shared living arrangement. We should not allow people to cluster housing, for example, to have two four-bedroom houses side-by-side. There are very good reasons that recommendation is in the report.

Chairman

I thank Mr. Lynch. Are there any final remarks?

Ms Kathryn O'Shea

It is about individuals turning up as individuals in the community. Otherwise one arrives on the bus. Six people cannot fit in a regular car, so then one turns up in the Brothers of Charity bus or whatever. That is not what this is about.

Deputy Bernard J. Durkan

This may have been discussed in my absence. I know all the members of the group here are conscious of the case of a person, usually a woman, who cares for a child with particular needs, sometimes quite profound needs, at home with help from respite and occasional residential care. As life goes on, the burden becomes greater and the fear of what happens afterwards becomes greater as well. Somebody mentioned to me recently that she has spent half of her life caring - nothing else - and attempting to work at the same time. There comes a time, if the burden becomes so great, when the person loses heart. If that person loses heart, then the State has to pick up the entire responsibility. I want to try to emphasise the need for increased respite or week-long or weekend - whichever is more appropriate - respite care so that the person concerned in dealing with the caring to such an extent that he or she has done can live even half a life independently. That person may need to do so anyway to earn a living, because there may be other siblings.

Mr. Brian O'Donnell

I mentioned in my presentation that we now have carers who are 80 years old or more. It is very much in support of what Deputy Durkan is saying. It is a new phenomenon. As we all live longer, the carers are living longer, but many are in crisis situations. I very much support the Deputy's point.

Mr. Christy Lynch

One way to try to address that would be to ensure that there is a dedicated amount of money to expand respite provision in the budget for 2018.

Deputy Bernard J. Durkan

We will do our best.

Chairman

On behalf of the committee, I thank Dr. Shari McDaid, Ms Caroline McGuigan, Ms Kathryn O'Shea, Ms Sarah Lennon, Mr. Brian O'Donnell, Mr. Christy Lynch, Ms Kathleen O'Meara and Mr. Brendan Lennon.

The joint committee adjourned at 4.16 p.m. until 12 noon on Tuesday, 23 May 2017.