Michael Harty (Clare, Independent)
Link to this: Individually | In context | Oireachtas source

The purpose of this meeting is to engage with the Disability Federation of Ireland and the Center for Independent Living, Carmichael House, regarding the UN Convention on the Rights of Persons with Disabilities and its relevance to health and well-being. On behalf of the committee, I welcome Ms Joan O'Connor and Ms Anne Winslow of the Disability Federation of Ireland and Mr. Michael McCabe and Mr. Gary Lee of the Center for Independent Living.

I draw the witnesses' attention to the fact that by virtue of section 17(2)(l) of the Defamation Act 2009, they 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. They 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 entity by name or in such a way as to make him, her or it identifiable. I also advise them that any submission or opening statement they have made to the committee may be published on the committee's 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.

I ask Mr. Gary Lee to make his opening statement.

Mr. Gary Lee:

On behalf of the Center for Independent Living, Mr. McCabe and I thank the committee for its invitation to appear before it this morning. Tracing its roots back to the civil rights movement in the US in the 1960s, the Center for Independent Living has been established in Ireland for the past 25 years. We are a national disabled people's organisation and, as such, are governed by people with disabilities. The philosophy and ethos of the Center for Independent Living is reflected in the UN Convention on the Rights of Persons with Disabilities. We believe disability is not intrinsic to the person, rather it arises as a result of barriers created by society or societal failures to make accommodations to ensure people can participate in their communities. The convention is about protecting, promoting and ensuring the full and equal enjoyment of all human rights and fundamental freedoms of people with disabilities. It does not create any new rights but rather collates existing rights into one comprehensive international treaty. It is therefore not surprising that it was the fastest negotiated human rights treaty ever.

Last March marked the tenth anniversary of the signing of the convention. A total of 172 countries have ratified it. However, Ireland, to its absolute shame, has not yet done so. Ireland is alone among European Union member states in this regard. In a sign of the importance of the convention, the European Union itself took the unprecedented step of ratifying it. This marked the first time the European Union has ratified an international human rights treaty. It beggars belief that Ireland has not ratified the UN Convention on the Rights of Persons with Disabilities. It is an affront to our citizens with disabilities and to those who gave their lives for an independent Irish State. The Proclamation of the Irish Republic speaks of guaranteeing "equal rights and equal opportunities to all its citizens", yet 100 years later people with disabilities in Ireland enjoy fewer rights than their UK counterparts.

It is clear that disability is not a priority for the State. Our national disability strategy lapsed 12 months ago. A new strategy, which took almost 18 months to complete and which, we understand, has been ready since January, has not yet been published. Why is the Government dragging its heels and delaying the introduction of the new disability strategy? The Center for Independent Living is carefully considering its position on the national disability strategy implementation group, given we cannot monitor and implement what does not exist. This should not be taken as criticism of our Minister of State with responsibility for disability, whose bona fides are not in question, but rather the lack of appropriate devolved powers and supports given to him.

Of obvious importance to the committee is Article 25 of the convention which deals exclusively with health. We wish, however, to underline specifically the importance of Article 25(c) which requires that health services be provided as close as possible to people's communities, including rural areas, and Article 25(d) which relates to raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and promulgation of ethical standards for public and private health care.

Well-being is covered throughout the convention. Today in Ireland, at least 2,500 people with disabilities live in institutions, with a further 1,100 under the age of 65 inappropriately placed in nursing homes. Census data show us that Irish people with disabilities have significantly poorer educational outcomes and job opportunities and are far more likely to experience poverty than their non-disabled peers. Ordinary things like choosing what time to get up, what to have for breakfast and what to wear are denied to many, as is accessing public transport, socialising, marrying, having a family and other norms of life. Basic challenges arise. For example, wheelchair users must give at least 24 hours' notice to Iarnród Éireann should they wish to use the DART. The same applies to Bus Éireann.

This presentation is a joint document, and my colleague, Mr. Michael McCabe, chairperson of the Center Independent Living, has asked me to make the presentation on behalf of the centre. Michael can tell the committee of an experience from last week where he gave more than 24 hours' notice to get a bus from Navan to Dublin but the bus that arrived was not accessible. Michael had to get a taxi instead, which cost €70. If we do not have an accessible transport system, it has a knock-on effect around health services. Health and well-being should not be confined to a health-based medical model or system. This issue is wider than just health. I thank the committee for hearing us today and we are certainly happy to answer any questions later on.

Ms Anne Winslow:

I thank the Chairman, Deputies and Senators for facilitating us and giving us an opportunity to present to them in the context of the UN Convention on the Rights of Persons with Disabilities and especially its relevance to health and well-being. We are honoured to be here with CIL and the other organisations that have presented to the committee before us on this topic. I am accompanied by my colleague, Ms Joan O'Connor, the Disability Federation of Ireland, DFI, development manager in policy and research. I work part-time as a senior policy adviser to the DFI. I will give the committee a little background on the DFI and I will outline both the need for a whole-of-government approach to addressing the needs of people who have disabilities and the link to health. I will also outline the need for increased resources and a multi-annual investment programme.

The Disability Federation of Ireland, DFI, is an umbrella body of 130 organisations. Through our work with individuals and organisations, the DFI works to shape and promote an equal society which is fully inclusive of people with disabilities. We listen to and are in touch with the current needs of people with disabilities.

On the issue of health and the United Nations Convention on the Rights of Persons with Disabilities, CRPD, as Mr. Lee has said, the road to ratification of the convention has been a long one, more than ten years so far. The most recent hurdle to achieving this goal has been our work on the Disability (Miscellaneous Provisions) Bill 2016, but that still requires more improvements and more work. Ireland is the only EU member state that has not ratified the CRPD.

Disability tends to be narrowly perceived as a health issue, a view which has been reinforced by the medical model of disability. We see this routinely through our interaction with public services and across Departments. Disability tends to be boxed in with health issues. Even within the HSE itself there are divisions in various health sections between mental health, disability, acute care, primary care, and health and well-being. This does not necessarily lead to a well co-ordinated approach, nationally or locally. In the UN convention, disability covers the whole person. The DFI advocates for a whole-person approach.

Health is determined by a broad range of factors, most of which are outside the health sector. Social well-being and economic and environmental factors are the main determinants of health. We all understand health to encompass basic health services and also disability specific services such as living independently and being included in the community. It is, however, not just health and disability-specific services that will achieve quality of life for people with disabilities and their families. There needs to be interconnectedness between the Department of Health and other Departments to achieve an adequate standard of living. We need to provide social protection, including poverty reduction, and this comes under the Department of Social Protection. Provision of accessible housing stock comes under the Department of Housing, Planning, Community and Local Government. Being able to provide access to inclusive, quality education comes under the Department of Education and Skills. Access to work in an environment that is open, inclusive and accessible comes under the Department of Jobs, Enterprise and Innovation. Transport has also been mentioned in the context of people with disabilities being able to avail of national transport services, which is the responsibility of the Department of Transport, Tourism and Sport. Those factors support an individual to live with health and well-being in their community but are outside the direct responsibility of the health sector. Despite this, the burden on the health sector has increased and is being placed on the Department of Health and on the HSE. This will continue to increase if these factors are not adequately addressed. The demand will grow for health and disability services and therefore increase the costs for the Department of Health. In the absence of a whole-of-government approach to addressing these needs, the outcomes will continue to be modest. If there is more pressure on health services, people cannot get jobs or transport.

We recognise that as our services are structured in this State it is the responsibility of the Department of Health to remind other Departments of their responsibilities to deliver adequate services for people with disabilities. In effect, the Department of Health is holding the problem. Why is this so important? I believe a cross-departmental approach is required to see some changes in the health and well-being of people with disabilities and for the health sector to begin to see a level of return on its investment, because we know the investment in disability services is large.

A way of doing this is through the Government's national disability inclusion strategy implementation plan. This has been overdue since January 2016 and it has still not been cleared by Cabinet. It requires that all the Cabinet, including the Taoiseach and the Ministers of various Departments, understand disability as a cross-cutting issue that needs the proofing of decisions across Departments. The co-ordination as envisaged between Departments under the national disability strategy did not occur. We still have numerous examples of disjointed ways of working. Younger people with disabilities are being inappropriately placed in nursing homes due to a lack of a co-ordinated response from the Departments responsible for housing and health. It is ironic we have the decongregation programme to move people out of institutions while we have young people who have always lived in the community being moved into nursing homes, and this was referred to by Mr. Lee. There is disjuncture between mainstream employment policies, which are the responsibility of the Department of Social Protection and the Department of Jobs, Enterprise and Innovation, and the comprehensive employment strategy for people with disabilities, which is the responsibility of Department of Justice and Equality. This results in people with disabilities being excluded from mainstream activation measures and moves away from that seamless and co-ordinated approach we want.

The public sector duty is a legal obligation on all public bodies to promote equality and protect the human rights of all who are affected by their policies and plans. Today we ask the committee in its capacity to seek to implement a whole-of-government approach with specific actions. This would lead to more effective outcomes for people with disabilities and a more efficient use of resources, especially in health. It would make Ministers and officials in each Department accountable.

I also wish to highlight outcomes for people with disabilities in budget 2018. People with disabilities are having difficulty getting timely and effective interventions at the earliest opportunity.

The budget allocated to disability services for 2017 was €1.68 billion but we are still asking whether the outcomes were good. The situation is worsening for people with disabilities in this country. As Mr. Lee stated, poverty for people with disabilities is increasing while the situation is improving somewhat for the population in general. The disposable income of people with disabilities fell by 7.4%, a drop of €1,047 per year, between 2010 and 2015. This means people's income is down by €20 a week. This is a massive hit at a time they and their families are under pressure, and it needs to be restored. People can manage under pressure and cuts only for so long. People with disabilities and their families have been doubly hammered, by the cuts in their pocket and by health cuts. Up to 1,100 young people with disabilities are living inappropriately in nursing homes due to a lack of appropriate housing and community supports. The list goes on.

The Department of Health and the HSE need to move from a crisis mode approach to providing services for people with disabilities to an advance planning approach that can plan for addressing the true needs. The Disability Federation of Ireland has much evidence to support planning, for example, the number of people diagnosed with particular disabilities or conditions each year, data on the number of people with disabilities in each county and the impact of this on them. We are a long way from having enough quality services for people with disabilities to live and take part in their communities like everyone else.

We need action on the UN convention and the Government's national disability inclusion strategy. Implementation matters and budget 2018 matters. We need a cross-departmental multi-annual investment programme for the delivery of community services and supports, as well as Departments working together to improve inclusion and value for money from the health spend.

Michael Harty (Clare, Independent)
Link to this: Individually | In context | Oireachtas source

I thank the witnesses for their opening statements.

John Dolan (Independent)
Link to this: Individually | In context | Oireachtas source

I should say I am the chief executive of the Disability Federation of Ireland and I know all the witnesses before the committee today and those who attended the previous meeting. Mention was made of the public sector duty, which comes out of the Irish Human Rights and Equality Commission Act 2014. I remind the committee that the Department of Health has specifically mentioned the public sector duty in its statement of strategy. The only other Department to do so is the Department of Justice and Equality. The Department of Health stated it is conscious of its responsibilities to ensure the principles of the public sector duty on human rights and equality are embedded in the work of the Department. It gives the example of the Department's commitment to create a more responsive integrated and person-centred social care system which, among other things, and here is the very interesting point for us, supports the full and effective participation of people with disabilities in society on an equal basis with others in accordance with the UN Convention on the Rights of Persons with Disabilities. It also mentions independent living. I particularly want to take the time to mention this because it is one of very few Departments that has stated that while its business is about health and well-being, it is also about people's dignity and human rights. This brings us to the cross-cutting measures.

Mr. Lee from the Center for Independent Living spoke about the beginning of the independent living movement in Ireland. This is an important occasion for us to remember briefly the late Martin Naughton, who died recently, who was core to this and was a great colleague of everyone here over the years. Mr. Lee was very strong in his presentation about the fact that Ireland has not ratified the UN convention. The approach of the State is to say when we have our legislative ducks lined up, we will ratify. In Mr. Lee's view, is there any reason the State must do it like this? Could the State ratify it and then get on with the legislative programme of implementation in other areas or must it be done this way? Quite frankly, for many people with disabilities, the fact there have been repeated commitments by Governments to ratify, to which they have not adhered, means it is almost like the longer it takes to introduce legislation, the further the implementation programme is pushed out.

Both presentations mentioned the national disability strategy implementation plan. My understanding is this was to be in place at the start of last year. How is this seen by the witnesses? Another key area mentioned in both presentations is the number of young people who were living in the community but are now in nursing homes. Ms Winslow described the irony that we have a very strong programme to get more than 2,500 people in institutions into the community. This is a question for both witnesses. What is not working in the community in terms of supports? Is it a choice that 1,100 people have made in their 30s, 40s and 50s to go into nursing homes or is there something missing?

The Disability Federation of Ireland's presentation included the notion that the Department of Health is holding the problem. Is it that the Department is holding the problem, cannot give it away or cannot share it? Must something else happen somewhere else to unlock it? How does the Department of Health get the Department of Jobs, Enterprise and Innovation to take a bigger interest or make public transport more accessible? Can the Department of Health do this?

Mr. Michael McCabe:

It is obvious that in the past eight years no money has gone into personal assistance services. This is restricting people living in their own homes. At present, many people are getting home care packages but they can use them only at home. This is making people prisoners in their own homes.

If only people would realise that it is much cheaper for people to live in their own homes than in residential care. Mr. Lee will answer the other questions.

Mr. Gary Lee:

I will first answer the question on what is not working in the community and try to put it in the context of health. We did four reports recently on transport, employment, housing and personal assistance services, respectively. I can provide the joint committee with copies. I would like our members to speak for themselves. For this reason, I will cite from the reports some comments made by members on how they are experiencing life on the ground. The first is from our housing report:

I find policies and protocols will be developed to account for people with disabilities as vulnerable people. Doctors, occupational therapists and case workers must assess your needs. Service providers must run risk assessments etc. While this may be necessary in some cases, it is not necessary in all cases. No respect is given to the wishes or knowledge of the person with a disability.

The second is taken from the transport report:

To travel to my doctor and back in Donegal costs €70 return. There is no accessible public transport so I have no choice but to go by car. I have to save the money that I should be spending on essentials like food to pay for the journey.

The third statement is taken from the report on personal assistance services:

The provider I am familiar with is funding and staff led. While it can't control the lack of funding, it can enhance the process of empowering people with a disability to know what their world would look like with all their needs met. People with a disability don't have a clear process into assessment or what they can ask for. Fear and secrecy is at the heart of too many people's lives and [this is] reflected in how they engage. The service provider generally does not address this adequately.

The same report features the following comment from another service user:

[It is] definitely not fair or user friendly. I regard the system as one in which the client is 'done to' – the assessment process is highly subjective. Recently, I have obtained copies of PSDS policies from different parts of the country. Not only is the assessment subjective, based on assessment tools from 1965, in terms of policy it is biased on a geographical basis and depends on the skill and judgement of those handling the budget at local level.

These are only a sample of comments made by our members about how they, as persons with disabilities, experience life in Ireland in 2017.

Clearly, there are not enough supports in the community for people with disabilities. The national disability strategy, the UN Convention on the Rights of Persons with Disabilities and best practice are all about enabling people to live in the community. Achieving this requires the provision of proper supports. Money is being invested in building nursing homes all around us and the beds in these homes will have to be filled. In our experience, the people who own these homes are not too fussed about the demographics of the people who are filling these spaces. This is a matter of serious concern to our members. While on the one hand investment is being made in building nursing homes, on the other hand there has been no further investment in personal assistance services since 2009. How does that tee up with what the Government says it is doing and is supposed to do? Investing money in institutions while failing to make proper investment in supports to enable people to live at home is contrary not only to the UN Convention on the Rights of Persons with Disabilities but also to the national disability strategy policy.

The supports required by people with disabilities have been documented. The best source of information is to ask people with disabilities who use services what they need. The Center for Independent Living is based on the philosophy of active citizenship. As well as pointing out the difficulties and issues that arise, we also set out how these problems can be solved. The solutions come from those on the ground. We are asking that we be listened to because these solutions will ultimately save money. If we were discussing the private sector, the market would dictate how a service would operate and how much money would be invested in a particular service because a service would not be used if it was not good enough. The position in this case is the reverse in that services are simply provided for people with disabilities.

The UN Convention on the Rights of Persons with Disabilities is about people with disabilities being listened to and becoming involved in the monitoring process of the convention. To respond to Senator Dolan's question, there is no legal impediment to Ireland ratifying the UN convention. The failure to ratify is for policy reasons only. There is nothing in the convention which provides that X, Y and Z must be done before the convention can be ratified. The Government will speak of Ireland being a dualist system and the need to have all our ducks in a row before we can ratify. My response is to ask whether life has been getting better for people with disabilities since the convention came into play ten years ago and the answer to that question is a resounding "no". The Government is not, therefore, busy getting things right before the convention can be ratified.

An issue arises regarding the term "reasonable accommodation" on which a ruling was made following the referral of the Equal Status Bill to the Supreme Court in 1996. The Supreme Court decision refers to "reasonable accommodation" in terms of the property rights of private citizens and states that it may encroach on constitutional rights in the area of property. Now, 21 years later, our view is that this judgment was particular to a specific Bill at a given time and should not be used as a weapon for refusing to ratify the convention. We understand the Attorney General has provided legal advice on the decision. We have not seen the advice and have asked that a copy be published. We understand the Taoiseach can waive the privilege that applies in respect of such advice and make it available in this case. As far as we are concerned, there is no legal impediment to ratification. Other dualist nations have ratified it.

On the national disability strategy and implementation group, I will give the example of employment to which Senator Dolan referred. A so-called comprehensive employment strategy was launched in September 2016.

I would like to know how many jobs for people with disabilities have emerged from that. Of particular concern was that there was no sign of the Department of Jobs, Enterprise and Innovation, not only at the launch in 2016 but in terms of engaging with the comprehensive employment strategy, it has been left to the Department of Justice and Equality and the Department of Social Protection. Why are jobs for people with disabilities not an issue for the Department of Jobs, Enterprise and Innovation? For anyone who does not have a disability, it is the Department of Jobs, Enterprise and Innovation. If a person has a disability, it is a health or medical matter. People with disabilities are the same as everyone else. We are all citizens of Ireland. Why exclude people with disabilities from the Department of Jobs, Enterprise and Innovation? That is one example of where there is not joined-up thinking or support.

We are experiencing a lot of frustration in terms of the national disability strategy. We are now being told we have a Minister of State with responsibility for disability who sits at the Cabinet, although he is not a member of Cabinet, and that issues relating to disability should be passed on to and dealt with by him. Disability should be a matter for every single Department. There should be someone specific in those particular Departments who is responsible for disability, and the Department that should have over-arching responsibility to make sure the national disability strategy is rolled out by Departments is the Department of the Taoiseach. In my experience of the past four or five years on the national disability strategy implementation group, it was only when the Taoiseach's Department became involved for a period of about five or six months that we saw movement by other Departments on the national disability strategy.

On supports and why they are being given to nursing homes and maybe the older age sector when they should be given to disability, I would say it relates to fair deal. That is set up as a statutory scheme. Civil servants naturally follow the statutory scheme and the money will go to the area where legislation provides for it. There is no statutory basis for personal assistance services. Indeed, there are more than 30 non-statutory schemes run by the Department of Health, some of which have nothing to do with health, and we would question why things such as mobility and transport grants and even personal assistance services are the responsibility of the Department of Health. Why are they in the Department of Health and not, for instance, in the Department of Social Protection or the Department of Justice and Equality? These are some of the issues I wanted to raise today.

Ms Anne Winslow:

Mr. Lee touched on a lot of the topics. I have been working in the disability sector for 30 years, either volunteering or where family members have a disability, and we get movement when disability becomes a political issue, is taken seriously by the Taoiseach and the Cabinet and is given priority. In recent years, disability has not been seen as an issue by our politicians. I cannot overstate how significant this is. Many people in Ireland live with a disability and their families are impacted. A huge percentage of the population is impacted by disability in one way or another. Until it is taken seriously again as a political issue by the Taoiseach, in particular, by the Department of the Taoiseach, and by the Ministers in Cabinet, we will not have serious movement towards meeting the needs of people. There is an obvious legislative requirement and each Department is accountable for delivering outcomes that clearly make a difference to people's lives, whether they be jobs, education or supports, and for ensuring there is interconnectedness between those. Good strategies are being developed that might need more specifics. We have good legislation and the convention but we lack the political will. I cannot overemphasise how important we see this committee's role in influencing that and, through the means available to it, putting it to the Cabinet and the Taoiseach that we need an approach that cuts across Departments. We need the political will to take it on. There are many organisations and people who can help in aspects of implementation at statutory, voluntary and not-for-profit levels. We need that political will if we are going to make a real difference. Until we do that, we are wasting our resources, not using them efficiently and not having good outcomes for people, which is the most important thing. There are countless stories we could tell about people we know who have made representations and come to us, and we have to put our finger in the hole to plug the water coming out, as it were. We live in the community. People with disabilities want to live in the community and need supports to do that. We want to live in the community.

To answer Senator Dolan's question, people are going into nursing homes, largely not by choice although sometimes it is, and living with elderly people in inappropriate settings because often a package to suit their needs has not been put together, even though that would be very cost-effective.

Is the Department of Health maintaining the problem? I think the answer is yes, because that Department is not demanding that it be a cross-cutting issue, either within its own work or between other Departments, nor is it looking for measurable outcomes that could make a difference. All that links back to our policies and quality of life principles and so on. They all link back. There are so many different policy documents we are looking to fulfil, so let us unlock the problem. Let us get the political will. What would it take for it to be taken seriously?

Ms Joan O'Connor:

On the Disability (Miscellaneous Provisions) Bill, there will be discussion around deprivation of liberty, but people with disabilities are effectively deprived of their liberty when they cannot access a personal assistant and they only get half an hour in the morning or in the evening and they are stuck in their home all day. In this way they are isolated and are on the margins of society. Senator Dolan asked about what was not working in the community. For example, there might be someone on the social housing waiting list who is nearing the possibility of getting accommodation and getting a home but there are no health supports to match. There are waiting lists and they cannot access the health or social care supports to take up the offer. Another example is that they may be living in their home with elderly parents and having a very uncertain future. I wanted to highlight those examples.

Mr. Michael McCabe:

I would go a bit further than that. The area of disability has to come out of the Department of Health because it is not a health issue. If I am unwell, I will go to a doctor, but my disability is not a health issue. If we remove the area of disability from the Department of Health, it will solve a lot of problems.

Margaret Murphy O'Mahony (Cork South West, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

I welcome the delegates and thank them for coming before us. I am the Fianna Fáil spokesperson on disability services. Since I was appointed approximately a year ago I have been absolutely blue in the face trying to get the Minister of State, Deputy Finian McGrath, to ratify the convention. Do the delegates think there is anything more I or we, as politicians, could be doing to bring this issue to a head and have the convention ratified? The Minister of State guaranteed that it would be ratified by the end of 2016. We are nearly halfway through 2017 and, even though we are getting closer to ratification, we are still not progressing quickly enough for me. Do the delegates have other suggestions to make to allow their groups to push us, as politicians, to bring the issue to a head?

I have two other observations to make. I am glad that various speakers have brought up the fact that it is not just a health issue. A whole-of-government approach to disability services is essential at this stage. Any motion, Bill or policy being introduced should have to be disability-proofed. Many speakers also referred to the importance of personal assistant hours. Through my work I deal with a lot of groups that work with people with disabilities. The lack of personal assistant hours and the fear of losing a medical card are the two huge issues that keep coming up. I am with the delegates on that one.

Colm Burke (Fine Gael)
Link to this: Individually | In context | Oireachtas source

I thank the delegates for their comprehensive presentations which I very much appreciate. I return to the budget of €1.68 billion for disability services. Is that money coming from the health budget or from a number of Departments? There is a health budget of approximately €14 billion. I am not sure whether the sum of €1.68 billion is part of that budget or the social welfare budget. Will the delegates identify what is coming from the social welfare budget for the disability sector for supports? Will they identify all of the supports provided by the Department of Social Protection?

It has been mentioned that people here are at a loss compared to people living in the United Kingdom. Will the delegates outline the rights people here do not have? It is important to highlight and focus on the differences and how people here are at a disadvantage as a result of the convention not being implemented.

The delegates spoke about the number of people in nursing homes. I agree with them, but the building of nursing homes is a matter for the private sector. The decision to place someone in a nursing home is not taken by the person running it. An application must be made through the health service. It is not the private sector which makes the final decision. When an application is made to have someone admitted to a nursing home, especially a young person with a disability, is there a mechanism in place within each HSE area to see if there is an alternative to admission such as a more comprehensive home care package? From my dealings in this area, I am not convinced that there is. Have the delegates sat down with HSE representatives in the various regions to see if this issue can be dealt with to ensure better outcomes for applicants? I have seen huge differences in people who have been able to remain at home because of a substantial increase in home care support. In one case it has added at least ten years to the person's life. I accept, however, that there might not be people available with the necessary skills to provide that support in some parts of the country. It is a major challenge, especially in rural areas, but it is an issue that needs to be dealt with.

The other issue about which I am greatly concerned and which I have had to deal with locally in Cork is related to people living in local authority housing. In March 2014 I came across a person with a major physical and intellectual disability being cared for by their parents who had a letter they had received from Cork City Council in July 2008 confirming that they were on the list of applicants to have adaption works carried out in their house. Six years on no works had been carried out. I communicated with the city council for more than six months to see if they could be progressed but without success. I then went to the Ombudsman and the works were carried out, but it took me 16 or 17 months. The person concerned was receiving full-time care which would probably have cost the State €3,500 a week, but there was no such cost because the person concerned was being looked after by their parents at home. There was a lack of co-ordination between the local authorities and the health and social welfare services. Have the delegates ever considered the possibility of putting a mechanism in place to get State agencies to work together? In fairness to the Cope Foundation in Cork, it did a huge amount of work for the family in question to try to get the city council to progress the works involved. I am glad to report that I managed to obtain €2.5 million for the city council this year to have 42 houses adapted. We will clear the list. It normally takes six to eight years from the date of application to have the works done. The family mentioned are the reason the €2.5 million is in place, not me. They highlighted the issue and now many other families will benefit as a result of their bringing it to my attention.

On the provision of disability officers in local authorities, there seems to be a huge lack of understanding, about which I have gone to the National Disability Authority. I submitted a freedom of information request to a number of local authorities, one of which replied that it was glad to report that the disability officer had dealt with two issues for the year, at a total cost of something like €12,000. My understanding of the role of the disability officer in a local authority is that it is his or her job to highlight cases such as that of a local authority tenant who needs assistance in having adaption works carried out to meet his or her needs. It seems, however, that disability officers have the attitude that their only responsibility is to ensure access to public buildings. Have the delegates communicated with local authorities on this matter recently? I raised it with the National Disability Authority over two years ago and I am still not convinced that anything has changed. There are approximately 40 local authorities. Surely people working at that level could identify some of the issues involved. It is not just about the streetscape or access to public buildings; it is also about access to services and, in particular, ensuring houses are adapted and planning for the number that will need to be built for people with disabilities. While we are all talking about the building of new houses, we are not talking about the number that will need to be built to cater for people with disabilities.

The delegates might deal with these issues. I thank them for the work they are doing, but there are challenges that we need to deal with. There are budgets available to do much of what needs to be done.

It is just a case of people applying their minds to having the works done.

Ms Joan O'Connor:

On the first point about the figure of €1.86 billion, it comes solely from the Department of Health.

Colm Burke (Fine Gael)
Link to this: Individually | In context | Oireachtas source

Does Ms O'Connor have a breakdown of the social welfare budget for services for people with disabilities?

Ms Joan O'Connor:

I do not know what the breakdown is.

Colm Burke (Fine Gael)
Link to this: Individually | In context | Oireachtas source

It might be useful to know.

John Dolan (Independent)
Link to this: Individually | In context | Oireachtas source

The figure is approximately €3 billion, but we can check it. If they were not labelled as "disabled", they would still receive the money. Mr. McCabe's point is interesting about whether a person's disability or his or her need is the issue.

Ms Joan O'Connor:

On the point about young people being placed in nursing homes, we sit on the national consultative forum and the main problem seems to be budgetary and resources not being available. When people are admitted to a nursing home, the common summary assessment report is filled in. It poses a question about the appropriateness of the placement. DFI is conducting research and analysing the forms to ascertain how appropriate placements in nursing homes are. My understanding is funding is not available for the necessary number of packages of health and social care supports. It is almost like there must be a crisis. A pot of money can then be accessed through the fair deal scheme and the person concerned will end up in a nursing home. We also receive many calls from people living in nursing homes to tell us about their situation and that they do not want to be there. There are younger people, but the level of care does not support progression towards independent living or helping them to do something for themselves. Co-operation is needed in the identification of resources within the health budget to resolve the issue.

Ms Anne Winslow:

I will take Senator Colm Burke's questions first and then come back to Deputy Margaret Murphy O'Mahony's.

A connection is needed between housing and the supports people require and which are currently being provided by the Department of Health. As Ms O'Connor said, the fair deal scheme has locked in resources in a specific way and they are not being freed for people who prefer to stay in their community. It is a double-edged sword. On the one hand, there are not sufficient resources and money in the community for good assisted living and personal assistant supports to put appropriate packages together, while, on the other, the only to way have an inappropriate solution is to put people in a nursing home. Flexibility is needed somewhere, as well as a tying up of what is going on. It is a serious issue for many people who are affected.

I am delighted that the Senator has improved the budget for the payment of housing adaptation grants in Cork. The budget has been cut and there have been great difficulties throughout the local authorities in this regard. It is a no brainer that if something suitable is done in somebody's house to make it more appropriate to their needs, he or she can stay at home. That matter needs to be examined as one that requires additional resources.

Deputy Margaret Murphy O'Mahony asked how we could help her and how we could help each other. That would be a good way forward. It is important to have the UN convention ratified, but it is even more important to make Departments accountable under the implementation plan for the national disability strategy. It will mean making constant requirements of the various Departments and Ministers concerned and their special advisers and officials, which will mean breaking it down into manageable pieces and addressing what we are looking for in each area. Some work has been done on that issue in the strategy, albeit not enough, but there are measurable outcomes. It is then about having the will to pull it all together. As Mr. Lee said, we want it to move from the highest political level to responsibility being taken by the committee and, in particular, the Minister of State with responsibility for people with disabilities. It is about interconnectedness. We will do anything we can to help, including providing information, data, statistics and evidence of good practice. It is important that we work with the committee and the Deputy in that regard. I make that offer on behalf of the DFI. It will also be true of the other umbrella bodies. We need a joined-up approach, even among ourselves, to get this issue onto the table. I appreciate the Deputy's comments.

Mr. Gary Lee:

I will take both questions on the convention together. Ratification is an important step, but it is only the start. The world will not change for people with disabilities as soon as Ireland ratifies the convention. The treaty gathers existing rights and includes them in one comprehensive instrument, but, under the convention, there is an obligation to raise awareness of disability issues. I have no doubt that the Minister of State is committed and wants to see the convention being ratified, but the State has left it on the long finger. It was not a priority, but now as soon as it is under pressure to ratify, suddenly the Government is trying to sort things out in the disability Bill which was rushed and is approximately half the size and half as comprehensive as it should be.

Ms O'Connor mentioned the deprivation of liberty. If there was the political will, this could be done, but the Minister of State does not have the support of a political party behind him and is not a member of the Cabinet. There may be issues in that regard. It is not for the want of trying on his part, but he is up against the system. At the end of the day, it is a bad signal to send to people with disabilities. If the Government is not prepared to sign an international treaty which North Korea signed before Christmas, it sends a signal all the way down the line and ends up in scenarios where abuses could happen. There is a direct line between what is done at the top and what happens at the bottom. Implementation will be important. As soon as we ratify the convention, we will need to be in a position to make sure it is implemented and that people with disabilities can monitor its implementation, as required under Article 33.

On the difference the convention will make and the difference in the rights of people with disabilities have in the United Kingdom compared to those living in Ireland, one can take an individual complaint to a UN expert committee where his or her state has breached the convention. Within two years of signing it, the Government will be reviewed by the UN committee on the rights of persons with disabilities.

Thereafter, a report will be done every four years on the Government and how it is progressing the rights of people with disabilities under the UN Convention on the Rights of Persons with Disabilities. Until we ratify it, that does not come into play. I would say the Government is concerned about resources and their allocation. I am concerned in the meantime that resources are being eroded. They have been eroded. If members look at the joint statement the Disability Federation of Ireland, the Centre for Independent Living and other organisations launched yesterday, which details what is needed and which we can make available to members, they will see it is a resource issue.

Decisions that fundamentally affect the rights of people with disabilities to engage in society in the same way as their non-disabled peers can engage - such as those about personal assistance services - can be made at the stroke of a pen. There is no accountability. There is no proper independent administrative tribunal available to people to question decisions that are made that affect their lives. As I mentioned earlier, there are some 30 non-statutory schemes under the Department of Health that many people rely on with regard to engaging with the community and living in society. In the UK, there are tribunals. If a decision is made and one is unhappy with that decision, one can appeal that decision to an independent body. They are some of the differences.

Again, we would look for personal assistant, PA, hours. Mr. Michael McCabe will talk about personal assistant services shortly, so I do not want to go into too much detail. With the PA service, the leader - that is the person with the disability - can direct the service. That person can decide what time to get up at in the morning, what to have for breakfast, what to wear, where to go out, how to use his or her time, whether to go shopping or whatever else, rather than being told that assistance will be available at a certain time. Personal assistance can enable people to do these things that others take for granted. They are not then dependent on family members or friends. That changes the dynamic of their relationships. If one is relying on family members or friends as carers, then one is really changing the dynamic of the relationship with that person.

We have engaged with HSE teams. It varies from region to region. There are some fantastic people trying to do much within limited budgets. There are other people who are driven by figures and budgets. The system itself needs to be reviewed and changed. I will give specific examples. I can think of one man in his 40s who went in to hospital for a procedure and who had never lived in an institution. He had always lived at home, initially with his parents, and with personal assistant services. He went into a hospital for a procedure. As he was in hospital, he lost his PA hours. Following the procedure, he was required to take medication. There are issues about whether personal assistants can give medication to leaders - the people with disabilities that they are serving. In that particular case, he moved from the regional hospital that he was in. He refused to go into a nursing home, which is where he was being directed. He went into a community hospital. I visited him on numerous occasions during the two years that he was in that community hospital. During that time, there were people coming and going. People were dying in a ward beside him. He shared the ward with three other people. At one stage, the ward was closed for a number of weeks because of an outbreak of some illness or another and he could not get in or out. He was directed to the nursing homes support scheme - the fair deal scheme - to get a nursing home, because that is where the money was.

We thought that perhaps we could judicially review the decision on his situation. Eventually, after two years, some creative accountancy was done and hours from older age support were given to him to enable him to live back in his house. The local authority was very good. It kept his house for him for the almost two and a half years that he was in hospital. It was only because of his determination that he managed to secure those hours that enabled him to go back to living in the community.

Michael Harty (Clare, Independent)
Link to this: Individually | In context | Oireachtas source

Does Mr. McCabe wish to speak?

Mr. Michael McCabe:

I will follow up on what the personal assistant means to me. I worked for 20 years. I am married. I am very active in the disability sector. I would not be able to do any of this without a personal assistant. My wife and I would not be able to have an equal relationship if I was constantly depending on her. It is very hard to explain if one has not experienced it before. The other thing I would ask the committee to do is to consider direct payments. Those have to come in. We have been fighting for them for the last number of years. It will be much more cost-effective as well.

Michael Harty (Clare, Independent)
Link to this: Individually | In context | Oireachtas source

I thank Mr. McCabe. I have a few questions myself, then I will call Senator Colm Burke again.

Colm Burke (Fine Gael)
Link to this: Individually | In context | Oireachtas source

I have a question about disability officers in local authorities.

Ms Anne Winslow:

I can comment.

Michael Harty (Clare, Independent)
Link to this: Individually | In context | Oireachtas source

We are a little stuck for time. We hope to finish by 11.30 a.m.

I will bring Senator Burke's question in. There are a number of concerns among the families of people who are in congregated settings. They wonder how those people are going to manage in their communities if they are decongregated and if proper supports are not put in. The Minister of State, Deputy Finian McGrath, said that 500 people moved out of congregated settings last year. There will be approximately 180 this year because funding is limited. There are concerns about decongegration. While it is the policy of the Government to decongregate, there are concerns about how people will cope, particularly those who have been in congregated settings for a long time. The other question is on respite services and people moving from adolescence into adulthood.

They may have had access to respite services as adolescents but when they move into adulthood they have great difficulty accessing respite care.

On the PA hours issue, the Minister was here a couple of weeks ago and there was a dispute between Senator Dolan and the Minister on a mathematical calculation of the number of PA hours. The number of PA hours allocated this year is 1.4 million. It seemed the number allocated last year was 1.3 million but it was actually 1.5 million and it was now dropping back to 1.4 million. Perhaps the witness has some comments on that.

On the point raised by Mr. Michael McCabe, how close are we to moving to personalised budgets and will they be cost effective? They give autonomy to the person but can people actually access services themselves with personalised budgets? I interrupted Senator Burke's question.

Colm Burke (Fine Gael)
Link to this: Individually | In context | Oireachtas source

On the disability officers there was a comparison with North Korea. It is fine to sign a declaration that it will be implemented. I would be careful with the comparison to North Korea's implementation.

Ms Joan O'Connor:

DFI has a number of staff working regionally around the country with local authorities. They have built up relationships with staff in local authorities and with disability officers. I agree with the point that we should not focus solely on the access issue. Their remit should be broader. There is a job of work to be done to make mainstream public services more disability friendly and making them fit for purpose. Our staff are engaged in that work, and working with the local community development committees and the public participation networks. That work is ongoing, and hopefully we will see results from that. We see results from it already.

Ms Anne Winslow:

On the issue of the officers, it was brought in years ago to address the issue of access and it has been weak enough. It needs to be buoyed up and taken more seriously. There are some examples of good work but it is about building on that. Equally, one of the most frustrating things for working people with families is the variations depending on where people live and how things are managed and co-ordinated. We have been trying to achieve a standardised approach and co-ordinate clearing houses in order that people can have a joined-up approach to their plans and their work. We are trying to achieve person-centred services around personal plans. There are some good examples of practice that are good at putting the person and their family in the centre but there are some very poor examples as well. We need to see improvement on key workers to work with people and their families in order that we can join up all the various aspects.

Senator Dolan highlighted the issue of the variability of the number of PA hours with the Minister recently. The reality is that there are not enough. We have lost some hours and need to start building up again. At minimum we are talking about adding 500,000 hours as soon as possible, hopefully as a result of this budget or the budget in 2018.

There is no doubt that respite services make a big difference to families. This should be a budgetary issue going forward. We have had cuts in respite grants and services. We have had examples of bed closures and beds not being available because of cuts in services or other demands. Respite care makes a huge difference to families and I am sure that the committee is hearing how big a difference it can make to be able to manage and have planned breaks throughout the year. It makes living in the community better for everybody, particularly for parents and carers, but also for the person if it is an appropriate respite placement. Sometimes people get put into places which are not appropriate. Those options need to be freed up again. We had growth. We should see that improve again.

We need to take this seriously. We have good policies, and we even have pieces of legislation which have never been fully implemented. This includes the plans we are now talking about. Political will is needed and, as Mr. Lee said, that influences the mindset throughout. We need leadership from the top to complement the good work that is being done throughout the regions and counties. The mindset needs to change. We need to see this as an equality and rights issue, and give people some hope again. I am very involved with people living with multiple sclerosis. The condition can progress and change. Hope makes a huge difference to people's quality of life. I cannot overemphasise how important it is to bring some hope back to people's lives, when they are living in the community and doing their best.

Mr. Michael McCabe:

I believe that people should not get a PA allocated without training. It is an important part of the relationship because some people can abuse the PAs.

On the question of personalised budgets I would imagine that some people have them already, although it is not publicised very well. I met a friend last week who has 40 hours. It is not enough, but he has direct payments. I understand that people are worried. Young people with disabilities are no different than anybody else. They have to live in their own way, live their own lives and make mistakes like everybody else does. Parents can be very overprotective but they are not doing any favours for their kids.

Mr. Gary Lee:

In response to Senator Colm Burke, this committee could do something practical.

Only one organisation in the State, HIQA, can get to the bottom of the inappropriate placement of people in nursing homes. HIQA can take thematic approaches, and it has done so on matters in the past. We would ask that HIQA take a thematic approach - take the inappropriate placement of people in nursing homes as a theme and get the facts and the figures. It is the only organisation that can do this. Perhaps the committee could make a recommendation along those lines as that would give us a clearer picture.

In the context of North Korea, believe it or not, last week was the first time a UN human rights monitor was allowed into that country. It was the special rapporteur on the rights of people with disabilities. She went there and provided a very diplomatic report afterwards. Members can look it up on the UN Committee on the Rights of Persons with Disabilities, CRPD, website. I utterly accept the Senator's point in that regard. Nevertheless, Ireland should be leading the way. We should be ratifying it.

According to the Government's figures, there are more people waiting for PA hours than individuals who have access to such hours. There has been no investment in PA services since 2009. At a minimum, it should be doubled in order to address the waiting lists. It is the younger people who are having difficulties accessing PAs. They might have supports in terms of school and third-level education but after that they are on their own and they go to the back of the queue for PA services. As a result, it is very difficult for them to plug into life. Getting a job is even more difficult. There must be investment in PA and other support services that enable people to live in the community.

Michael Harty (Clare, Independent)
Link to this: Individually | In context | Oireachtas source

I thank Mr. Lee.

Mr. Michael McCabe:

To follow up on what Gary Lee said, pure PA services and support services are paid for from the same budget in many cases.

Ms Anne Winslow:

On congregated settings, there is no doubt that there are worries about people moving out. In an ideal world there would be choice as well for people to live together, because people get peer support regardless of their disability. It is not an ideal, but the movement is bringing about a huge change from people's institutional experience. There is going to be a lead-in period for people and it will take a while. It is natural that there are fears and some of the solutions undoubtedly are not ideal. In the normal scheme of things, the Chairman and I do not choose to live alone; we choose to live with other people, so there will have to be some more flexibility in it. I appreciate the concerns the committee has heard in that regard. At the same time, however, we must push that model to bring about real change, including in the mindset.

Colm Burke (Fine Gael)
Link to this: Individually | In context | Oireachtas source

If I could clarify something, there are very good people working extremely hard within both local authorities and the HSE to try to ensure that the best quality service is available. With regard to adaptation work on houses, I understand from the Department that there is adequate funding available to local authorities now. If the organisations encounter a situation where a local authority is not delivering, they can contact the committee and the Chairman and I will have no difficulty with going to the Department to provide any assistance we can. The vast majority of people in the public sector work hard to get the best possible service for people with disabilities.

Ms Anne Winslow:

I agree that there are some really good people.

Michael Harty (Clare, Independent)
Link to this: Individually | In context | Oireachtas source

On behalf of the committee, I thank Gary Lee and Michael McCabe from the Centre for Independent Living and Anne Winslow and Joan O'Connor from the Disability Federation of Ireland for attending.