Dáil debates

Thursday, 10 November 2022

Report of the Joint Committee on Disability Matters on the UNCRPD: Motion [Private Members]

 

5:15 pm

Photo of Michael MoynihanMichael Moynihan (Cork North West, Fianna Fail)
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I move:

That Dáil Éireann shall take note of the Report of the Joint Committee on Disability Matters entitled "Ensuring independent living and the United Nations Convention on the Rights of Persons with Disabilities", on 10th March, 2022.

I thank the members of the Joint Committee on Disability Matters for the major work and effort put into the report and into our deliberations over the past two years. Our members are extremely dedicated and committed to the challenges we face. Our committee is about disability matters and we are challenged to make the lives of people with disabilities better for them, their families and their communities.

Each week, we have public meetings. Before I get into the nuts and bolts of the report, I must inform the House that we have heard harrowing stories from people with disabilities and their families and carers over the past two years. Sometimes on the Thursday morning you would be completely exasperated by challenges that families, communities and individuals meet every day because of their disabilities. We listen to that, and the group of people on the committee I am lucky to chair have huge empathy and a huge work rate in advancing the cases for people with disabilities and making their lives better.

The team supporting the committee has done a massive amount of work on pulling together all the information we received. We started out with the now international phrase "Nothing about us without us", and we looked at going out to people with disabilities and looking for the lived experience. Somebody said at a committee meeting recently that it is not the lived experience but the living experience and people living on a daily basis with disabilities. I thank the team who bring the information to us daily and support us in a way that can only be commended. We are lucky to have them.

Today we are looking at the report entitled Ensuring Independent Living and the United Nations Convention on the Rights of Persons with Disabilities. When we were going through that process, we had various stakeholders in. The challenges faced and the issues of people with disabilities not being seen as full people in society cannot be overemphasised. We cannot overemphasise the frustration they feel every day. In their communities and families, those frustrations are met every day.

We came with the report, which was laid before the Houses of the Oireachtas. The challenges we look at concerned the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, a landmark convention. It is a fantastic document but means nothing to society or to people with disabilities unless it is implemented. The United Nations has put a huge amount of work into it. Deputy Cairns joined me on a visit to the United Nations earlier this year. There was a huge amount of talk about what needs to be done. Let us be real about it. While we can talk about the UNCRPD and the implementation thereof, it is a worthless document unless states, including this State, stand up to meet the challenges head-on.

This morning at the disability matters committee there was frustration among members about the ratification of the optional protocol. A key cornerstone for us is to have that protocol implemented. While the UNCRPD is implemented, the optional protocol is going through Departments. We get advice from different people in front of us but we do not see why there should be any delay in the ratification of the protocol. A key thing we need to do is to ensure it is ratified.

We seek to ensure people with disabilities can enjoy the same human rights as everybody else by integrating people with disabilities into societies, communities and economies. There are various theories and Maslow's theory gives five stages of life and fulfilment, including safety, belonging and basic needs, but also esteem, love and fulfilment. If we take that for all citizens, particularly people with disabilities, as a guiding light, we can make huge change.

The word "culture" has been used constantly at our committee.

There is no question or doubt but that a huge cultural change is needed in order that society integrates completely people with disabilities. Whether they are integrated into the school, the workplace or society at large, society and the world are better places for it.

We have a number of recommendations, and the members of the committee who are here will probably speak to a number of them. I will give just an overview of some of the recommendations and what we can do as a State and a Government. If we are to ask private citizens to do this, what can we do that will make a fundamental difference?

There has to be a quota in the public and State services for people with disabilities to integrate them more and more into society and to make sure they are in the workplace. I always used to say that if we could have Leinster House in rural Ireland, we might have more pro-rural policies. If we had more people with disabilities in the public sector and involved in the decision-making processes, policy would be disability-proofed.

We have discussed housing many a time at the Committee on Disability Matters. The building regulations refer to ramps and so on. Because we are talking about the rights of people with disabilities, it is hugely important we ensure they have a choice as to where they are to live. Where there is a quota for people with disabilities to work in the public sector, it will reflect society better and it will be easier. Such regulations should be in place.

We speak in the report about it being time to move on from congregated settings and about Article 19 of the UNCRPD. Slow progress is ensured by heavy reliance on emergency residential placement processes, moving individuals from large to smaller settings without their having a choice as to where to live and placing younger people with disabilities in nursing homes. One of the stark realities we heard about when the evidence was brought before us was that of young people living in nursing homes because of their disability. That is simply no longer acceptable in the Ireland of 2022. There has to be an urgency to how we will deal with those issues. It must be absolutely soul-destroying not only for the individual with a disability but also for the family, the carers and the community who support him or her to see that happening. I could speak of two or three families and individuals I talk to daily or weekly. I know the heartache and the pain that is behind their daily smiles because they are trying to get the right settings for their loved ones to live in. They want to make sure those loved ones have the opportunity or the chance to live with dignity in a home of their choice or accommodation that is suitable for them.

The committee has also called for the development of a national plan for the realisation of the right to independent living, including supports for agencies, and the reconfiguring of services to support that right. That must be undertaken in conjunction with an overarching policy framework to remedy the situation of people with disabilities aged under 65 who live in nursing homes. The committee also believes that people with disabilities living at home, many with elderly parents, can be left out when it comes to choosing and accessing independent living. Measures must be strengthened to access and to address that unmet need. On that point, many families of people who come from congregated settings bring loved ones or siblings or other family members into their own homes. When it comes to the adaptation grants or the various other grants available, all the income of the household is taken into account. That debars people from getting the basic grants for the individual because the house is not in their name or because of the household income. Two pensions and an occupational pension might be brought into account, and that is simply not right. We had the policy going back 20 years that the money follows the patient or the individual. That impediment in local authorities simply has to change. These are the small things we can change along the way to make sure people with a disability can live comfortably in their own homes or with family. It should be made possible for that impediment to be taken into account. I see the Minister of State nodding her head, and I welcome that, but is it possible to look at that and to see what we could do? When a person is coming from a congregated setting - he or she may have suffered an acquired brain injury - a huge change may need to be made to the house to accommodate him or her. Then, when State support is sought, it is simply not there.

Again, I thank the members of the committee. Our Vice Chair, Deputy Tully, and Deputies Ellis and Cairns are here in the Chamber. I thank them for their dedication to the work they do every Thursday morning and the compassion and empathy they show on a cross-party basis. We do not divide in one way or the other on politics. We have a job to do. We have to implement the UNCRPD. We have to ensure that when our committee has finished its work, we will have made better the lives of people with disabilities and the families and communities who care for them. I pay tribute to the members of the committee for the way they work in unison to make sure we get the best possible outcome. I have a raft of other issues in respect of the report that I would like to raise. I recommend the report to the House. I would like to see some of the recommendations in it implemented as soon as is humanly possible.

5:25 pm

Photo of Anne RabbitteAnne Rabbitte (Galway East, Fianna Fail)
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I apologise for being late. I have apologised to the Acting Chair. I thank Deputy Michael Moynihan and all his team who sit on the Committee on Disability Matters and who meet, as he said, every Thursday morning for their continuous dedication, not just on this matter but on so many other issues on which the committee is shining a very important spotlight. This is an important conversation. The committee has assisted me in breaking down many barriers and creating awareness. I am greatly appreciative not only of Deputy Moynihan and all his team but also of the secretariat and the people who come before the committee. It is a huge effort for some people to participate in its meetings. That is greatly appreciated. It helps to shape policy and is not a wasted effort. The evidence is listened to. Sometimes we might feel that the pace of this is very slow, but the committee's time and effort are noted and appreciated.

As Minister of State with responsibility for disability, I am wholeheartedly committed to ensuring that people with disabilities are supported to live the lives they want to live and are provided with equal opportunity and every opportunity to do so. The report being discussed is extremely helpful in advancing that work. It is comprehensive and insightful. It will help to inform the Government's approach in developing and implementing policy. Ensuring independent living for people with disabilities is a whole-of-government priority, and many of my Cabinet colleagues also have responsibilities in working towards that goal. The report recognises that challenge, and it is important we embrace the challenge of meaningful integration and participation.

So much of what the UNCRPD is designed to achieve is, at heart, the independence, dignity and inclusion of persons with disabilities. Currently, the primary means by which we advance the rights under the convention is through specific legislation and actions contained in Ireland's two overarching national disability policy frameworks: the national disability inclusion strategy, NDIS, and the comprehensive employment strategy, CES, for people with disabilities. The NDIS contains 120 actions to support effective progress in delivering on the obligations set out in the UNCRPD. The CES is the primary disability employment policy initiative in Ireland. We are all aware of the importance of employment to living independently, in respect of not only the financial contribution that work can provide but also the social and personal value that having a job brings and the sense of meaningful participation within wider society.

The programme of work set out in both of these strategies provides for continuous work in advancing disability issues and rights under the UNCRPD.

It is a great credit to the committee that there is more to say about this report than my speaking time allows. However, there are certain key issues and recommendations I wish to address in the time I have. One recommendation made in the report is the immediate ratification of the Optional Protocol to the Convention on the Rights of Persons with Disabilities. Committee members will be aware the ratification of the optional protocol is a commitment in the programme for Government. The timeline for ratification was originally anticipated to follow the conclusion of Ireland's first review period before the UN committee. Due to delays at UN level, Ireland's appearance before the committee will now be delayed. Due to this delay, the Minister, Deputy O'Gorman, and I have indicated we are open to the earlier ratification of the optional protocol. My Department is working to scope out the requirements for earlier ratification, and this work is required due to the long-standing position of the State on honouring international agreements. As a matter of foreign policy, Ireland does not enter binding treaties until it is sure the obligations set out within can be complied with. While I would like to be in a position to tell the House this evening there is an exact date for ratification, unfortunately I cannot, but rest assured, it is a priority for me to ensure the optional protocol is ratified at the earliest possible date.

Another key recommendation set out in the committee's report relates to disability awareness. There are commitments concerning awareness-raising in both the NDIS and the comprehensive employment strategy for persons with disabilities, CES. Under the NDIS and CES, my Department has responsibility for certain actions relating to awareness-raising activities. Proposals for national campaigns are being developed under those actions, and I will be in a position to make further announcements on them in due course.

The inclusion of people with disabilities in the policymaking process is of the utmost importance. I note and agree with the committee's recommendation that more needs to be done on that front, especially when it comes to disabled persons' organisations. In that regard, the Disability Participation and Consultation Network was established in 2020 with funding from my Department. It continues to be an important forum in which people with disabilities, including disabled persons' organisations, can become involved in consultations that inform the development of law and policy in Ireland. I note certain county councils around Ireland do not know what a disabled persons' organisation is. Therefore, we have a distance to travel to create awareness.

I am aware of the need to review continually the effectiveness of the mechanism we use to engage with people with a disability. I welcome recent publications of both the committee and the National Disability Authority concerning the participation of people with a disability in this regard.

I agree with the committee's assertion that people with disabilities have a right to independent living. They also need to be empowered to make independent decisions. In that regard, I am keenly aware of the importance and significance of the reform represented by the Assisted Decision-Making (Capacity) Act 2015. The Act changes the existing law on capacity forms from the status approach of the wardship system to a flexible, functional approach whereby capacity is assessed on an issue- and time-specific basis. Under this legislation, persons' will and preferences will be presumed and respected. This will empower people to take control of the decisions that affect their everyday lives. This is a clear obligation under the UNCRPD, and it is also the strong position of the Government. As many Deputies here will know, amendments are required to the 2015 Act before full commencement can take place.

The Assisted Decision-Making (Capacity) (Amendment) Bill 2022 will streamline processes in the best interest of those using its provisions. It will also strengthen the safeguards included in the 2015 Act. It is also being used to advance other legislative measures on disability inclusion issues. This reform is much needed and long overdue, and the Government is committed to commencing the amended 2015 Act as soon as possible.

I fully recognise the importance of personal assistance services to people who rely on them. I agree with the report's recommendation to expand the service. During my time as Minister of State, significant progress has been achieved.

The HSE provides a range of assisted living services, including personal assistance and home support services. These support individuals to maximise their capacity to live full and independent lives. The National Service Plan 2022 outlines the HSE's commitment to delivering 1.7 million hours of personal assistance services to 2,587 people and 3.12 million hours of home support services to 7,326 people this year. This reflects an additional 120,000 hours of personal assistance, which is the single biggest investment in personal assistance hours in several years. I also secured funding for an additional 30,000 hours of home support in 2022 to expand and enhance supports for people to live self-directed lives in their communities.

On engaging on going to work, I will need to work with employers. I will be asking the Department of Enterprise, Trade and Employment to support me in supporting people to make the transition with personal assistants.

I note the report recommends the introduction of a personalised budget model for people with disabilities. This is an area under consideration within the Department of Health and the subject of an ongoing pilot to scope out how a system for personalised budgets might work in Ireland. The personalised budget pilot is open to adults with a disability who receive HSE-funded services, including appropriate school leavers. The latter should be allowed to choose what they wish. I recently announced an extension to the personalised budget pilot until the third quarter of 2023, with the accompanying evaluation process to be completed in the second quarter of 2024. This extension will facilitate suitable applicant participation and allow time for a robust evaluation to be completed. I have removed the age barrier that determined when a person could get involved. It is important that people can have a choice in their lives, regardless of whether they are above or below 65.

Regarding the report's recommendations on housing, transport and social protection, I highlight that responsibility for these lies chiefly with the Minister for Housing, Local Government and Heritage, Deputy O'Brien, the Minister for Transport, Deputy Ryan, and the Minister for Social Protection, Deputy Humphreys, respectively. However, I note work being led by the last Minister under the Roadmap for Social Inclusion and Pathways to Work strategies. Under these frameworks, the Department of Social Protection has committed to developing and consulting on a straw man proposal for the restructuring of the long-term disability payments. I welcome that work and look forward to its outcome. The report on the cost of disability, published by the Department of Social Protection at the end of 2021, will also inform any changes made to how the State supports people with disabilities.

I note the recommendations in the committee's report on housing. The programme for Government commits to ensuring there is an appropriate mix of housing design types provided, including universally designed units, and accommodation for older people and people with disabilities. The second joint National Housing Strategy for Disabled People 2022-2027 was launched by the Minister for Housing, Local Government and Heritage, Deputy O'Brien, in co-ordination with my Department and the Department of Health on 14 January 2022. The new strategy sets out the vision for the co-operation and collaboration of Departments, State agencies and others in delivering housing and related supports for disabled people over the next five years. The purpose of the strategy is to enable disabled people to live independently in communities of their choosing, with integrated support services, which affords them appropriate choices and control over how they live and with whom they live.

I wholeheartedly agree with Deputy Moynihan that, where a person has a disability, regardless of whether he or she is being discharged from the National Rehabilitation Hospital or another hospital, and he or she wishes to be returned home, means testing should be removed. It is one of the biggest barriers to ensuring people can be returned home. Sometimes families have to put the money together before a person can return home. The grant of €30,000 for returning people to their homes is not enough. We need to increase it to what it used to be in years gone by, namely €50,000 or €60,000.

I think it needs to be increased up to that level. Given the cost of extensions and the adaptations to which the Deputy refers, we must be far more agile and pragmatic in ensuring that we do not have long stayers in acute beds that take far longer to discharge because of the barriers of means and not enough funding for housing adaptations. This is something I have raised with the Minister, Deputy Darragh O'Brien. I also welcome the fact he has almost sorted the funding to ensure that ceiling hoists would be put in place in conjunction with stair lifts. People will have a choice, as we will be able to support them to live at home rather than having a medical model whereby people must be in a nursing home because they do not have ceiling hoists at home. That is something on which the Minister, Deputy Darragh O'Brien, has done a lot of work and I look forward to his announcements in the coming days.

I welcome the committee's findings on transport for people with disabilities. The Minister, Deputy Eamon Ryan, is fully committed to strengthening public transport offerings and progressively making them accessible for all. In line with the UNCRPD, the Minister for Transport and the agencies under his Department are progressively making public transport accessible, including in rural areas, by ensuring that new infrastructure and services are accessible from the start, and retrofitting older legacy infrastructure and facilities to make them accessible. This requires a "whole-journey approach" which refers to all elements that constitute a journey from the starting point to destination. It also means applying the principles of universal design.

The Government recognises the fundamental importance of the right of people to independent living. I again welcome the committee's report in that regard. Important progress has been made in respect of this right and I want to be able to celebrate that. However, this journey is one of continuous advancement and it will take time. I will continue to advance measures to progress rights under the UNCRPD and I will also continue to drive forward the necessary reforms over the coming weeks and months. I look forward to working with the committee, going forward, in the delivery of some of the actions set out.

5:45 pm

Photo of Martin BrowneMartin Browne (Tipperary, Sinn Fein)
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I will not use the ten minutes allocated. The United Nations Convention on the Rights of Persons with Disabilities obliges countries to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity. The committee report calls for a policy response that provides for people with disabilities and their right to live independently in a place of their own choosing, with the freedom to choose and control their lives. Our pursuit of this objective as a State means a fundamental shift in what we have achieved to date. To begin with, it is unnerving to realise that Ireland was the last to ratify the convention, which we did in 2018, some 11 years after we signed it.

The committee has noted that as the ratification of the optional protocol of the UNCRPD has not been undertaken, it means that people with disabilities are effectively unable to make a complaint when they feel that their rights under the convention have been breached. When I realised this, I was left speechless. Such a fundamental provision had been passed over. Let us imagine how that makes people feel. Let us imagine not being able to contribute to such a profound aspect of a convention that is designed to reinforce one's rights. Even the matter of consultation has left much to be desired. Through its engagement with disabled persons' organisations, the committee notes that a significant level of transformation is needed for people with disabilities to be placed meaningfully at the centre of the consultation process. Policies are discussed over the heads of those for whom the decisions are being made. This must stop and the situation must be addressed. The UNCRPD must be followed. There is need for rapid progress. It is shameful to see how people have been either overlooked or just passed over. Either way, it is shameful to realise this has been the case.

Housing, for example, is a key challenge at the moment. The IHREC notes in its report that people with disabilities are twice as likely to report discrimination and inequality in accessing housing and more than 1.6 times more likely to live in poor conditions. People with disabilities are over represented in the homeless population with more than one in four homeless people being disabled. Access to housing is made even more problematic for people with disabilities, insofar as the system of applying for a house and independent living supports is complex and is characterised by a lack of transparency. There is little co-operation between local authorities and the HSE. Aside from the fact that people are being let down in such a dysfunctional system, it must shatter whatever faith people have in the system eventually meeting their needs when there is little co-operation between the HSE and the local authorities. Without this type of co-operation, how can people who are in need of specific housing types ever be sure that they are even being treated appropriately within the system? The committee notes that this has resulted in people with disabilities who are accepted onto the social housing list having to wait longer before receiving housing compared to other people. These factors, alongside the other issues, such as not having an equal choice on where to live or the overall matter of independence makes it obvious that there is a lot to do.

I have only scratched the surface of what is a deeply insightful and detailed report. I will finish by referring to the definition the committee provides on disability-proofing. It is a strategy that aims to make sure that people with a disability and their specific needs are considered and included in the development and delivery of all projects, policies and practices from the earliest possible stage. This must be at the heart of the measures that we as a society and as legislators must implement without delay.

Photo of Holly CairnsHolly Cairns (Cork South West, Social Democrats)
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Article 19 of the Convention on the Rights of Persons with Disabilities is one of the sections of the convention cited most often. It calls for "the equal right of all persons with disabilities to live in the community, with choices equal to others, and...[for] appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community,". These are all principles we agree with. However, as the work of the committee has made clear, this is a highly complex area and one on which we have such a long way to go. To enable people to exercise this right requires complex supports, suitable housing and interconnected physical and social facilities. The committee's report is only possible because of the individuals and groups who volunteer to share their experiences and insights with us. It is our role as public representatives to listen and to use this knowledge for better legislation and policy. I record my thanks to the secretariat, which does incredible work in the background, and made this report possible. I also thank the Chair, Deputy Michael Moynihan, and the Vice Chair, Deputy Tully.

Housing stands out as the first main issue impacting independent living. The report notes several interconnected systemic problems: the chronic shortage of social housing; high and increasing rents; a lack of universal design, inadequate housing adaptation grants; and poor support services. Inclusion Ireland explained that one of the biggest barriers faced by people with intellectual disabilities in accessing accessible social housing is the lack of availability of the support services that are required for them to live in their own home. This results in people being made homeless, being kept in their childhood home despite their capacity to live independently as adults or being forced into institutional care. We know the HSE's plan, Time to Move On from Congregated Settings, is moving much too slowly. Most pressing is the more than 1,300 people under 65 forced to live in nursing homes because the State will not support them in community settings.

There is a clear consensus on the need for universal design to be integrated into building regulations to make housing liveable for diverse needs and to future-proof our homes. The Irish Wheelchair Association outlined how Part M of the building regulations only requires housing to be visitable for a wheelchair, not liveable. Alison Harnett, chief executive of the National Federation of Voluntary Service Providers points out that this is not only about housing specifically for people with disabilities, it is about having universally designed housing that is adaptable as people's needs change. It is about having housing that is usable for young parents with buggies, an elderly person who might have a walking mobility requirement and that is adaptable for people with disabilities. Inclusive design and policies benefit all of society. Design must also support non-visible needs. We heard about how people with autism should have homes that reflect their individual needs. There are other barriers, rarely highlighted, such as disabled people or those with chronic conditions being denied access to housing and mortgage protection insurance, making home ownership an impossibility.

Intersectionality is also important to fully appreciate this situation. A committee meeting marking International Women's Day last year showed how disabled women are often doubly discriminated against.

Maureen McGovern, a disability community activist, described struggling all her life "to live in a society that discriminates against me because of my impairment and gender, be it in education, training and employment, healthcare or in social, economic and cultural life." The UN highlights that girls and women of all ages with any form of disability are generally among the more vulnerable and marginalised of society. The National Women's Council of Ireland has noted that women with disabilities are more likely to experience violence, with 40% of disabled female students reporting having experienced rape, compared with 27% of non-disabled students. Responses to gender-based violence must appreciate this alarming situation.

Disabled women also experience barriers to accessing health screening services, resulting in a lower uptake of breast and cervical cancer screening. These can range from physical barriers to a lack of proper information. The Department of Health and the HSE need to take tailored approaches to these issues.

My final point relates to the significance of services for children. These services are especially important because they impact on an individual’s potential over his or her life. Delays in assessment, the lack of therapies and geographical lotteries are harmful to children's capacity to live independent lives. We need to have a frank and honest conversation about this. This week, we learned that more than 12,500 children with suspected disabilities are awaiting an assessment of need. This figure, provided by the Minister of State, amounts to 10,000 more than the HSE numbers. This is a scandalous situation. Children have the right to be seen by medical professionals and therapists in a timely manner and the right to education.

The optional protocol of the UNCRPD has still not been ratified and we still do not have a date. As a committee, we must redouble our efforts to push for action on this. We need consistency of services, fully staffed children’s disability network teams and the State to fulfil its obligations. This report is not the end of the process; it is a catalogue of the improvements and changes that are needed. It is up to the Government and the State to make these changes to provide these services and supports as soon as possible.

5:55 pm

Photo of Pauline TullyPauline Tully (Cavan-Monaghan, Sinn Fein)
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I welcome the motion on the report. I commend all the disabled people and the DPO representatives who appeared before us as witnesses and shared their lived or living experiences, because without that we would not have been able to compile the report. I also commend the Chair, Deputy Michael Moynihan, all the members of the committee and the secretariat because, again, without them, the report would not have been possible.

The report goes to the heart of the struggle for disability rights and the equality agenda for disabled people. The ratification of the UNCRPD was a milestone for the rights of persons with disabilities, but without the ratification of the optional protocol, disabled people have little recourse when their rights are denied. As Markus Schäfers, a member of the UN Committee on the Rights of Persons with Disabilities, has stated, the non-ratification of the optional protocol suggests Ireland is not confident or comfortable enough to open itself up to international scrutiny. Nothing is preventing the optional protocol from being ratified today and there should be no more excuses. It needs to be ratified without further delay because if we wait until we feel as though we can deliver everything it contains, it will never be ratified.

Without ratification, the rights of persons with disabilities are being denied, not least in respect of ensuring the right to independent living. The right to independent living is a crucial battle that people with disabilities are, unfortunately, having to fight. The ability to choose where and with whom to live and the ability to have privacy or to invite over friends and families are things most of us take for granted but that disabled people cannot. The medical model of disability, which seems to be still embedded within the Government's mindset and actions, must be assigned to the past. Investment in a training and development fund for disabled persons organisations to enable them to strengthen their ability to participate fully in consultation and cover the expenses they incur by taking part in these consultations is vital, and is an obligation under the UNCRPD. We need DPOs to consult the various bodies.

There is also a need to transfer, without delay, people from congregated settings into community settings with the appropriate supports. The target set down for the time to move on from congregated settings has long been missed, so we need a significant level of investment, with that investment to continue year on year until everybody has moved out of congregated settings, and I do not mean just from a larger to a smaller setting. That is not what most people want. They want independent living in their community.

Similarly, disabled people have been inappropriately placed in nursing homes. That practice is continuing and it should not be. Again, they need the proper supports.

As a committee, we urge the Government to review Part M of the planning and building control regulations to ensure that both public and private housing stock will be not only visitable but also habitable by persons with disabilities, including wheelchair users. The Government's national retrofit scheme is inequitable given that, currently, the same level of grant support for a deep retrofit is available for someone on the minimum wage as that which is available to a millionaire. People with a chronic illness or disability are more than twice as likely to be at risk of poverty as other adults and about twice as likely to experience basic deprivation and consistent poverty. There is a need to overhaul the national retrofit plan to ensure the resources are rapidly deployed and targeted at those living in energy poverty and in the greatest need of energy efficiency upgrades.

Ensuring independent living for persons with disabilities cannot begin without tackling the consistent poverty that is the experience of many disabled people. The Indecon report places this cost at anywhere between €8,700 and €12,300 per annum, but that is an average range and the figure could be even higher for some people. There needs to be a significant commitment to addressing this. The personal assistance service the Minister of State mentioned is an essential tool to enable disabled people to live independently, and I welcome the increase in the number of hours provided. Many applicants have told me they have either been refused or given hours insufficient to make a difference. Disabled people who have a personal assistant have told me about the huge difference the service makes to their lives, allowing them to live.

The Minister of State also mentioned transport, one of the key services that help persons with disabilities to participate in everyday life, obtain employment or engage in education. The motorised transport grant and the mobility allowance were stopped in 2013 because they were found to be inequitable. Instead of us addressing the issues, however, they were closed completely and not replaced, but they need to be replaced. Some people are in receipt of the mobility allowance while others are not, and that is not equitable whatsoever. The only scheme at the moment is the disabled drivers and disabled passengers scheme and most people do not even qualify for that. The conditions are stringent and there is no appeals board for those who have been turned down and want to appeal the decision. We need to see progress on transport to ensure both public and private transport will be accessible.

On the costs of disability in the context of the cost-of-living crisis, it was brought to my attention that persons in receipt of the disability payment for social protection who have taken up a training course and been transferred to a training allowance for the duration of the course will not be entitled to the €500 cost-of-living lump sum payment they would have got if they had remained on the disability payment. My party colleague Deputy Kerrane submitted a parliamentary question on this to the Minister for Social Protection, who confirmed it is true, and I do not think that is fair. Seven of ten people on one training course left the course today because they want to receive the payment, and they had been advised by their local social welfare office to do so to get the payment. This is sending a very bad message to the disability community. Disability does not just disappear because a person takes up a training course, and the cost of living and the poverty experienced by disabled people do not vanish if someone joins a training course. This does not fit into a rights-based model of disability. In fact, some older people have told me they have a disability and receive a pension but they are not getting the €500 either. They have asked whether their disability disappears when they turn 66. Perhaps the Minister of State will speak to the Minister, Deputy Humphreys, on the issue because it is very important and we are sending the wrong message to disabled people. It is encouraging people to leave training courses, but it is so important that we get people back into employment.

Photo of Dessie EllisDessie Ellis (Dublin North West, Sinn Fein)
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I am delighted to speak to this excellent report and I commend the Chair, Deputy Michael Moynihan, and the members of the Joint Committee on Disability Matters on their work in compiling this important report, all the staff who also did Trojan work and the various groups and organisations that contributed and helped put this report together.

They were fantastic.

I hope that Government takes note of the recommendations and implements them to help improve the lives of those with disabilities who face many struggles and barriers every day of their lives. We have in our society a situation that is all too common whereby individuals with disabilities lack the freedom to choose both who they live with and where they can reside. The options that are available to those with disabilities may include some that are often less attractive and more restrictive such as confinement in an institutional setting or facility, which often leads to a lower quality of life.

For too long, there has been a lack of focus in seeking to optimise supports for the individual in his or her home, or somewhere less restrictive than those currently being offered or available. We need to give those with disabilities the opportunity to have the same choices as everyone else. We need to give people with disabilities control over their own lives. They need to be able to make choices on an equal basis as those without a disability and be free to aspire towards those goals those of us who are not disabled often take for granted.

Disabled people should have access to and be able to make choices in education, employment, housing, transport etc. The statistics for those having access to any of the above are depressing. I will give the Minister of State some examples. Figures based on the 2016 census show that one in seven people have a disability, which is more than 640,000 people. One half of those with a disability are in the labour force compared with 82.3% of people without a disability. Figures also show that this applies irrespective of whether a person is male or female if he or she has a disability.

Only one in six people with an intellectual disability is in employment. Additionally, six out of ten people with such a disability are unable to work because of their disability, which leaves a large number of people who could work if suitable employment opportunities existed for them. The simple truth is that people with a disability in the labour force are less likely to be employed and more likely to be unemployed than people without a disability. In education, 13% of people with a disability have a degree or higher qualification as opposed to 25% of people without a disability. These are some important examples that illustrate the barriers those with disabilities must face.

With regard to independent living, it has been shown that there are clear advantages for the individual and the health service in general in eliminating barriers to independent living for those with disabilities. Independent living gives people greater choice when they live in their own homes. It has been recognised as an important factor in helping people with disabilities lead independent and fulfilling lives.

A recommendation from this report expressly asks that projects funded under the national development plan be compelled to use the principles of universal design. This recommendation would certainly align with Article 19 of the Convention on the Rights of Persons with Disabilities, CRPD, which aims to place people with disabilities on an equal basis with others in choosing their place of residence.

The report also recommends that the right to independent living be enshrined in law. This is a sensible recommendation, particularly in terms of the benefits for an individual's well-being but also in practical terms, as independent and semi-independent settings are shown to have lower costs. The report highlights inherent difficulties in the process of decongregation involving moving disabled people from congregated settings to homes in the community. While such a move is aligned with the ideals of the CRPD, there is too much reliance on the emergency residential placement process without proper consultation or input from the disabled individual. For this to be successful, a number of things need to be done, including a requirement for agencies to reconfigure their services and a restructured policy framework that excludes the placing of people aged under 65 with disabilities in nursing homes.

Having all the supports in place, particularly at local level, is crucial for a successful strategy enabling independent living. Without proper supports and a plan in place, an individual will find it difficult to transition to independent living. We have an obligation to ensure that each citizen has the same choices and opportunities as everyone else. This excellent report provides a pathway for Government to ensure that those in society who are disabled no longer face barriers that prevent them from making choices on an equal basis as those who are not disabled. We need to ensure that the sort of situation where a young child with a disability is excluded from her class never happens again. No person with a disability should be isolated, discriminated against or excluded in any circumstances.

6:05 pm

Photo of Anne RabbitteAnne Rabbitte (Galway East, Fianna Fail)
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I take this opportunity to reiterate my thanks to the Chair of the committee, Deputy Michael Moynihan, vice Chair, Deputy Tully, and the extended committee for all the work they have done.

As has been said, the right to independent living is at the core of so much of what the UNCRPD is about. It represents no less than what people with disabilities in this country are entitled to and expect from Irish society. As I outlined, a huge amount of work is ongoing across government to ensure that people with disabilities are facilitated in a real and meaningful way to live independent lives. They have a right to do that in an equal manner to their friends and families who do not have a disability. I am working to realise that right further. That cross-government work is co-ordinated through our national disability strategies. It stretches across a programme of legislative reform, most importantly through the work that is under way to bring the commencement of the Assisted Decision-Making (Capacity) Act to fruition.

I also welcome the announcement from the Minister, Deputy Foley, and Minister of State, Deputy Madigan, about transition planning in secondary schools. A pilot is being put in place, which is really important. It is hard to believe that in 2022, we are now talking about transition planning, which is where the young person has the right to choose, no different to his or her peers, how he or she would like to engage or participate in his or her next level of education. It is really welcome that we are now involving young people who have a disability in the choice. They have the will and preference to ensure they can choose where they would like to have their third-level education, how they would like to see it and whether they wish to participate in day services and have their voices heard. I welcome the announcement this evening. It is part of a comprehensive employment piece so that we can skill people up. That is so important.

This stretches across a programme of work to improve continuously the delivery of our disability services. This work will improve services in an explicitly rights-based manner and build upon progress to date. Over the coming period, we will see more work completed in recalibrating support bands in the Department of Social Protection. We will see the implementation of a housing strategy for disabled people and the expanding accessibility of our public transport system.

I totally agree with what Deputy Ellis said about universal design, about which there is such a lack of knowledge. When we talk about universal design, everybody thinks we are just talking about housing. It is our built environment as well. So many planners do not understand what UDA+ or UDA++ is or about the different size of wheelchairs. Universal design is not all about a person in a wheelchair. It can be a person who is visually impaired or who is deaf. It can be the lady who got her hip done recently and who finds it hard to go from one footpath to another or a tactile pad for a blind person that is not in the right space. While I welcome all the funding that is coming from the various Departments with regard to active travel, we need to ensure that universal design means the existing built environment is incorporated properly into the new building that is going on, whether that is a new footpath, bus stand or bus shelter.

There is that expectation if someone is visually impaired they do not realise if they are going off the new paths or the old paths. It has to be universally incorporated throughout. Some of that does not happen but it needs to happen in a big way.

I also know that there is much work still to do but I cannot lose sight of the progress and momentum to date. I want to build on that momentum and push the progress. I thank my colleagues in the various Departments where I do push the concept of universal design, whether it be in respect of housing, the local authorities or transport. They are listening. They participate in the national disability inclusion strategy, NDIS. They understand. With the assistance of the committee, that awareness and expectation has been brought to a new level. That is what UNCRPD is about, ensuring the person is at the centre no matter what Department or state agency is involved. There is a lot of work yet to be done in creating that awareness and in ensuring it spills all the way down. There has a be a bottom-up and top-down approach to ensure that the person continues to be at the centre.