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Dáil Éireann debate -
Wednesday, 6 Jul 2022

Vol. 1025 No. 1

Cost of Disability: Motion [Private Members]

I move:

That Dáil Éireann:

notes that:

- Ireland signed the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2007, and ratified it in 2018;

- in ratifying the UNCRPD, Ireland has committed to providing the highest attainable standard of healthcare for people with disabilities and to the provision of comprehensive housing and rehabilitation services, to enable disabled people to attain or regain maximum independence; and

- approximately one in seven people in Ireland has a disability, as defined under Article 1 of the UNCRPD;

acknowledges that:

- disabled people are among those who most acutely experience the cost-of-living crisis;

- the report entitled "The Cost of Disability in Ireland" was published on 7th December, 2021, and found that the additional cost of disability ranged between €8,700 and €12,300 per annum;

- the report found that meeting these higher costs was particularly difficult for the 152,000 people on the disability allowance, which is paid at a rate of just €208 per week;

- an Economic and Social Research Institute report entitled "Headline Poverty Target Reduction in Ireland and the Role of Work and Social Welfare", published on 13th June, 2022, found that lone parents and working-age adults with disabilities experience "distinctively high rates of income poverty, deprivation and consistent poverty";

- a major component of the additional costs faced by disabled people, and the families of children with disabilities, relate to grossly inadequate education, healthcare, social welfare and housing services;

- the Disability Capacity Review to 2032 - A Review of Disability Social Care Demand and Capacity Requirements up to 2032 (the Disability Capacity Review) was published on 15th July, 2021;

- the Disability Capacity Review found "significant levels of unmet need" in the provision of disability services, including a shortfall of up to 2,300 residential care places;

- on 5th April, 2022, the Minister for Health, Deputy Stephen Donnelly, informed the Dáil that a working group tasked with implementing the findings of the Disability Capacity Review, by developing an action plan for the period 2022 to 2025, had completed its work and an action plan was being finalised;

- nearly three months later, that action plan has not yet been published; and

- any action plan must be accompanied by the resourcing required to address the urgent and critical needs identified in the disability capacity review, including a substantial plan in budget 2023; and

calls on the Government to:

- introduce a cost of disability payment in budget 2023 of at least €20 per week, as a first step to addressing the significant additional costs of having a disability;

- increase the disability allowance by at least €15 per week;

- publish the action plan to implement the disability capacity review, including setting out a plan to fill the 732 vacant posts for therapists providing services for children with disabilities;

- publish the action plan to implement the Cost of Disability in Ireland report;

- honour the commitment in the Programme for Government: Our Shared Future to use the findings of the Cost of Disability in Ireland report to "inform the direction of future policy"; and

- guarantee an appropriate school place for every child with a disability.

I acknowledge the people and organisations in the Gallery and those watching at home this morning. Today is another day we discuss policy that deeply affects their lives. There are few groups in society whose opportunities and quality of life is so profoundly shaped by the Government. Decisions voted on in this House can provide or restrict healthcare, facilitate or deny employment and assign payments that keep people in poverty or allow them to live with dignity. Even more significant is the fact that individuals and cohorts most impacted have the least say.

We try to do things differently in the Social Democrats. Our motion is based on engagement with the Oireachtas disability group, which has helped us understand the specific and large policy context. Disabled people, their representative organisations and advocates are the experts. At all stages, our decisions on disability matters should be guided by them. I hope this motion shows to those in the Gallery and watching online that the Social Democrats are serious about evidence-based policy directly informed by the lived experience of those affected by those policies.

Today we are going to talk about different statistics. Each of these is necessary and important but we must remember there are individuals, groups and families behind these figures. Each number hides the lived experience of almost 750,000 people, not to mind their families, partners, carers and communities. This morning's discussion will highlight that disabled people are three times more likely to live in consistent poverty, that Ireland has the lowest employment rate for disabled people in the EU at 32% and that families have to fundraise for basic equipment and vehicle adaptions the State should be providing.

Statistics and examples only hint at the lived experience of a person being denied the right to full participation in society. Numbers do not represent the stories of capable, complex humans who want to contribute to society and who want to live independent lives. They do not relate the stories of parents who have had to fight for every basic State service from the moment their child was born. Each one of these cases is about rights. Appropriate payments, healthcare, education, housing and employment opportunities are not optional. They are not charity. They are the basics each person is entitled to.

The United Nations Convention on the Rights of People with Disabilities, UNCRPD, guarantees the right to equal treatment, access to services and to participate in decision making. Every week at the disability matters committee, the Oireachtas committee that oversees the implementation of the UNCRPD, we hear about how the State is failing to meet its obligations. Nearly one in four people did not use the personal assistance public service as it was not available or suitable. The most recent figures I received from the HSE indicate that more than 1,700 children were overdue an assessment of need, itself a system that has been thrown further into further disarray after the recent High Court ruling on its inadequacies. More than 1,300 people under 65 years are living in nursing homes because of a lack of suitable supported housing.

Crucially, this is not just about a breach of rights and these examples are part of a system that creates disability. Our understanding of the UNCRPD is through a social model lens that shows us how people are disabled by barriers in society, not by their capacities or differences. An extreme lack of accessible toilets and changing places restricts people from being able to socialise and leave home and an absence of flexible work arrangements prevents people from entering employment, with vastly insufficient social protection payments trapping people in poverty and worsening conditions. Until Ministers, Departments and State bodies demonstrate that they understand what a rights-based approach and the social model is, these fundamental issues will continue, creating and compounding disability.

Disabled persons' organisations, advocacy and support organisations, and local campaign groups, such as West Cork Special School, Families Unite for Special Services, FUSS, and the Parents Cork Advocacy Network help illustrate state failures. They reveal the daily breaching of rights and predominance of the medicalised model of disability in public bodies and paternalistic treatment of disabled people.

Significantly, the scale of the issues are catalogued by two Government reports. The first is the disability capacity review, published just under a year ago, which quantifies the current and future need for disability support services. One of the key issues highlighted is:

significant levels of unmet need for disability services, and that changes in the size and age profile of the disability service population will add to unmet need over the coming decade. Addressing demographic change alone would not be sufficient, as the current level of unmet need is not sustainable.

There is a need to spend between €550 million to €1 billion extra each year to meet the needs of the growing and aging population between now and 2032. This funding is needed for residential services and supported housing, adult day programmes, multidisciplinary therapy services, personal assistance and respite. The disability capacity review outlines the position and it is up to the Government to respond quickly and sufficiently. Unfortunately, despite this report being published almost 12 months ago and being with the Department of Health for substantial time before then, there is no clear plan.

On 5 April, the Minister for Health informed the Dáil that a working group, tasked with developing an action plan for the period 2022 to 2025, had completed its work. Nearly three months later, that action plan has not yet been published. Where is the plan? Where is the urgency to meet current unmet need not to mind future need? Our motion is calling for the immediate publishing of this plan, which must be supported by adequate resourcing and a commitment to implementation.

It is not just a matter of funding announcements. There is a massive gap between Government press releases and services on the ground. Recent cases of eating disorder treatment funding and other mental health programmes show us that funding can be reassigned and unspent. There is ambiguity around how HSE budgets are allocated and spent. For example, I and many other Deputies deal with cases where individuals are granted home support hours but only get a fraction of what they should. There is also the question of staffing. No service can happen without staff, including doctors, nurses, therapists, clinicians and management and support staff. Children's disability network team places are unfilled. Our motion has to specifically ask for a plan to fill the 732 vacant posts for therapists providing services for children with disabilities.

It is important to say that the failure of progressing disability services is not a representation of the amazing staff working in these teams; we simply need more of them. There is a pressing need to address retention and recruitment. Excellent people who want to help people and who chose a caring profession are leaving because of the poor conditions, low pay and plummeting morale. Students in healthcare, especially nursing and therapies, receive little to no remuneration and their first experience of working in the Irish health service is off-putting straight away. We also must have greater recognition and support for the role of healthcare assistants. Any action plan in response to the disability capacity review must include a comprehensive strategy and accompanying packages to recruit and retain staff.

The second key Government document is the Cost of Disability in Ireland report, published in December and only after considerable pressure from disability organisations and Opposition parties.

It found that actual costs faced by individuals ranged between €8,700 and €12,300 every year. This is worth repeating. It can cost more than €12,000 annually to have a disability in Ireland. Combine that with systemic underemployment of disabled people and the massive unmet needs in care, and it is no wonder we have disgracefully high rates of consistent poverty and social isolation among disabled people.

The Cost of Disability in Ireland report, written before the cost-of-living crisis, stated that households, including a member with a disability spent over 8% more on food and almost 10% more on fuel and electricity. This has been exacerbated by skyrocketing energy and food prices. Disabled people are among those who most acutely experience the cost-of-living crisis. This is not to take away for one second from the challenges and sacrifices of other families, but we know that households with a disabled member are feeling this much more. There is a glaring need for an action plan to address this crisis. After working with the Oireachtas disability group and looking at all the information available to us, we are pushing for an effective comprehensive course of action today. Money needs to be put into the pockets of people with disabilities. The Government must introduce a cost of disability payment in budget 2023 of at least €20 per week as well as an increase in the disability allowance of at least €15 per week. For a more long-term response, we want an action plan on the cost of disability report that outlines increased social protection and health payments, and introduces tax breaks for disabled individuals and their families. We also need the promised action plan to implement the disability capacity review to provide the public services required to help people live full independent lives.

We know what needs to be done. We are calling on the Government to bring in the necessary short-term and long-term changes to help people exercise their rights and live with dignity.

I thank Deputy Cairns for bringing forward this motion and acknowledge those in the Visitors Gallery who have travelled here today to stand once again for their basic rights. In particular I acknowledge my friend, Emilie Conway, from the Disabled Artists & Disabled Academics Group and her colleague, Jackie Conboy, who for the second week have come to the Dáil to demand basic service provision and respect. One in seven people in this country has a disability. That is 13.5% of our overall population. All of us will have a family member or friend with a disability. It is a very normal part of the human condition. It can be challenging at times, for sure, but disability can and should be celebrated too. In that vein, July is one of those times and I take a moment to wish everyone in this community a happy Disability Pride Month.

Disability in all its forms and inflections should unite us in common solidarity, yet people with disabilities continue to battle shame, stigma, discrimination and equality that is forced on them by an uncaring State. The pace of change is far too slow as a result of systematic failure and successive Governments choosing not to prioritise people with disabilities and their families. We have a real way to go before people will be able to access and participate fully in all aspects of our society. A good start would be supporting and acting on our motion today, which calls for the urgent establishment of a universal cost of disability payment. This would constitute a step in the right direction, acknowledging what people with a disability have been telling us for many years, that they are living in crisis and need action now. Let us be very clear that a payment would only begin to acknowledge this extra cost of disability. It is not charity. It is not because we feel sorry for people with disabilities and their families. The extra costs simply would not exist if our world was more accessible.

We stand with people with disabilities and demand that all barriers be broken down. There is much work to do if we are to reimagine and redesign a more equal and inclusive society. A cost of disability payment would be a very strong start in that regard. Our vision and hope in bringing forward this motion today is that this payment would be expanded and improved significantly over time. The programme for Government acknowledges the extra costs that are an issue. The Department of Social Protection commissioned a comprehensive Cost of Disability in Ireland report, which was published last December. It provides a very detailed yet stark picture of the challenges and struggles of day-to-day life for people with a disability and their families. Disabled people are more likely to be living in poverty and to be unemployed. The extra cost of disability can range between €167 and €237 every week. This does not add up. It is not sustainable for any household. It is shameful that more is not being done urgently to address this gaping inequality. The people with disabilities community have spoken about this issue for years.

Members will have read the European Disability Forum report from 2020 that examined the extent of poverty and social exclusion among disabled people. It looked at European countries and it will come as no surprise that Ireland did not score very well at all but was fifth worst on the list. It found that almost 40% of people with a disability in Ireland are at risk of poverty and social exclusion. That is a massive number by any standard and indicates that disability becomes the basis of a person's poverty. The report also tells us that during austerity times our disability community suffered more than most. It was and remains incredibly difficult to access appropriate housing suitable to their needs. They lost jobs and educational opportunities, like so many others. They felt the brunt again when public services were slashed, healthcare and transport to name but a few. They experienced direct cuts to disability supports and payments and, while the economy recovered for many over the intervening years, people with disabilities remain in a crisis situation as the report states. That is why the Visitors Gallery is full today.

Already on the back foot, since 2020 the community has faced the chaos of a global pandemic, the war in Ukraine, inflationary pressures and a cost-of-living crisis that by any standard is raging out of control. All of these additional stresses have imposed unprecedented and impossible challenges on a community that has absolutely no more to give. The Minister of State must see that this issue needs to be addressed as a matter of urgency. However, that does not appear to be the case. The Minister for Social Protection was asked in February of this year for an update on progressing action on the cost of disability report. The response was that the findings will inform the direction of future policy. The same wording is in the programme for Government. Like the programme for Government, there was no timeline given, no budget, commitments or promises, just the statement that a whole-of-government approach is required. We understand the words are there but not the actions to go with them. Given the seriousness of the report, the Minister's response at the time was insulting to those who are barely keeping their heads above water. People with disabilities are drowning. We know why they are drowning and they are going to be the ones who drown first but there does not seem to be any urgency. Why is no one listening to the lived experience of people with disabilities, their families, the disabled persons organisations, DPOs, the NGOs, the academics and other experts? The Minister of State should make no mistake that doing nothing is a policy choice and everyone can see it is the one that has been made.

I acknowledge our guests in the Visitors Gallery this morning. We know that a cost of disability payment is not a new concept. To achieve equality for people with disabilities, it is fundamental that the additional costs that come with disability are not paid by them alone. It is the responsibility of the State to cover those additional costs. The payment was originally recommended in 1996 and again in 2004, that is 26 years. It is a lot of Governments and a lot of time in which action has not been taken. The Cost of Disability report published last December revealed the amount that is required. It also found that meeting these higher costs is particularly difficult for the 152,000 people dependent on the disability allowance of €203 per week. The way in which social welfare payments are currently allocated is also a complete barrier to employment and financial independence. Supports such as disability allowance, invalidity pension, and the blind pension are reduced as soon as the person in question earns more than €140 a week, and for some that would also mean the loss of a medical card. That has to be looked at and changes have to be made. The more they earn, the more they lose.

The disability capacity review was published in July 2021 and is still awaiting an action plan. These reviews provide valuable information but without an action plan, nothing will change. It is past time for change. There has been a historical underspend in disability support services. We know that services are fragmented, there is a postcode lottery. We know all of that. There is a major job that needs to happen. All future investment into disability support services needs to be personalised and person-centred in line with the UNCRPD. It is a badly needed and massive increase in expenditure and it will not be achieved without a roadmap. Can the Minister of State be clear with us today on when exactly this action plan will be published?

We need to see action this year. Last year, people were disappointed because the plan was revealed but there was nothing in the budget. We need to see action in the budget this year.

I acknowledge the section 38 employees who are out on strike today. There is an issue there that must be addressed. On services, we know from dealing with people just how threadbare are the services. One ends up with emergency responses rather than a planned system. Emergency responses can be more expensive and chaotic. We cannot keep going on in that way. We need action on those two plans. We need to see action in the budget this year.

I welcome the opportunity to address the House on the important matter of the cost of disability. I, along with my colleague the Minister of State, Deputy Rabbitte, welcome all those who have travelled here this morning. They had an early start.

At the outset, it is important to state that this issue spans government and several Departments. Several Departments have contributed to the Government response to the motion and that is indicative of the breadth of cross-departmental working involved in addressing this issue. As Minister of State with responsibility for mental health and older people, I am acutely aware of these challenges across my brief. One of the things we learned very quickly in the context of our new policy for mental health, Sharing the Vision, is that responsibility for people with mental health difficulties, in the same way as that for people with disabilities, does not only lie with the Department of Health. It is important that we have input from the Departments of Social Protection, Housing, Local Government and Heritage, and Education. It lies across all the different briefs. It does not only rest with the Department of Health, although a significant part of it does. We certainly need that cross-departmental support for people, whether that is in the context of disability or mental health.

It is important to state that the Government is committed to informing future policy on disability through research such as that on the cost of disability, which touches on many aspects of the life of persons with a disability and the lives of their families. That was mentioned earlier. This is why a whole-of-government approach is required. It is why the cost of disability in Ireland research report was commissioned and published by the Government in December 2021. The report provides important and much-needed research that enables a better understanding of the extent and composition of these costs, and the ways in which they affect disabled people. The cost of disability report, prepared by Indecon international research economists, identified that additional costs of disability run across a number of areas of public expenditure. Those costs includes housing, equipment, aids and appliances, care and assistance services, mobility, transport, communications, medicines and additional living expenses. Furthermore, Indecon found that there is not a single typical cost of disability. Rather, there is a spectrum from low to high additional costs of disability, depending on individual circumstances. The analysis showed that, on average, the costs faced by individuals with profound disabilities range from €9,600 to €12,300 per annum, while for those with limited disabilities they range from €8,700 to €10,000 per annum. Although some of the costs reported through the survey are already met by the State, further improvements cannot be delivered through income supports alone. Indecon identified that solutions will require a multifaceted and broader perspective, covering areas such as housing, transport, education and health.

As the findings of the research have implications for many areas of public policy, a whole-of-government perspective is needed to address the cost of disability. That is why the Government referred the report to the national disability inclusion strategy steering group chaired by my colleague, the Minister of State with responsibility for disability, Deputy Rabbitte. The group comprises relevant Departments and agencies, a disability stakeholder group and disabled people themselves. It will consider and monitor recommended actions required by the various Departments on a biannual basis. In light of these findings, I can confirm to the House that all options will be explored during the preparation of budget 2023 measures.

Another of the conclusions reached by Indecon is that any additional supports should be targeted at those who are most in need and face the greatest additional costs of disability. Given this conclusion, and in line with the Government's roadmap for social inclusion and the Pathways to Work strategy, the Minister for Social Protection, Deputy Humphreys, and her Department have committed to developing and consulting on a strawman proposal for the restructuring of long-term disability payments. The main objective is to simplify the system, remove anomalies, take account of the continuum of disability and support employment. A public consultation on the strawman will commence at the end of this year or early in 2023.

In July 2021, the disability capacity review to 2032 was published by the Government. This report outlines how levels of service provision will have to be increased to meet growing demand into the future, as well as the necessity to address levels of unmet need that currently exist. It contains invaluable data that shine a light on the level of need for disability services which we, as a country, have a duty to address. It allows us to plan for increased capacity in our services and ensure that we meet the needs of those requiring specialist disability supports and services now and into the future. In the programme for Government, we committed to working towards the recommendations of the capacity review as its findings are simply too urgent. That is why we published the framework action plan alongside the capacity review and established an interdepartmental working group to develop a detailed action plan to put the capacity review findings into practice. This working group comprised senior officials from the Health Service Executive, the Department of Health, the Department of Children, Equality, Disability, Integration and Youth, the Department of Social Protection, the Department of Further and Higher Education, Research, Innovation and Science, and the Department of Housing, Local Government and Heritage.

As I said, the cross-government approach to this work is, and was, key. Ensuring appropriate supports and services for our citizens with disabilities is not simply a health matter, but one that reaches across the whole of government, ensuring that the totality of the individual is taken into account. It is also key that we listen to the voices of those directly affected, namely, those who use disability services and their families and carers. That is an important point. In order to achieve this, an extensive consultation was undertaken which attracted participation from almost 800 people, including people with disabilities, their families and carers, people who work in disability services, and umbrella and representative organisations. This information was then fed into the working group in order to inform its work on the action plan. The feedback received from the consultation was invaluable and I wish to take this opportunity to thank of all those who contributed their time and effort and helped make this such a collaborative piece of work. The working group has now concluded its work and the action plan is currently being progressed through the appropriate channels in the Department of Health for finalisation. The Minister of State, Deputy Rabbitte, will be in a position to publish it and begin acting on its recommendations in the near future.

I wish to pick up on a couple of points raised by Deputy Cairns. She is totally right in respect of home care and how important it is to older people and people with disabilities. I currently have a budget of €672 million to deliver home care supports. Unfortunately, there are challenges. Some 55,000 people receive home care daily, but there are 5,000 other people waiting. Their package is funded but we do not have the staff to deliver it. In that regard, I put in place a strategic workforce planning group that made interim recommendations to me last week. I will be in a position to publish that document very soon. It addresses different measures we will take to try to support more people to move into home care and to see it as an attractive career choice. I am working closely with the office of the Tánaiste, as well as the Minister of State, Deputy English, to consider whether it is possible to allow permits be issued to people living outside the EU to come to Ireland to deliver home care. That is already being done in the context of nursing homes. The problem is that 75% of those who work in home care do so part time. In order to meet the conditions of the permit, the employer would have to guarantee a minimum working salary of €27,000 per year and also guarantee two years of work. I am anxious to progress this, even as a pilot programme, to see whether it is worthwhile. We are moving on that at the moment.

I will be bringing forward a Bill on standards in home care, regardless of whether they are delivered through public, private or voluntary means, fairly soon in quarter three and coming into quarter four. I look forward to the support of the House on that matter.

We had a very good debate two weeks ago in the Dáil on respite care and older people. I know the Leas-Cheann Comhairle will be interested in this. I have undertaken a review of the number of respite beds across all nine community healthcare organisations, CHOs, to see where we are. Not all of them have reopened since Covid and I am very anxious to get all that up and running to support older people, people with disabilities and their carers.

I welcome the motion and thank my colleague, Deputy Cairns, for bringing it forward. I welcome everyone watching today in the Gallery and elsewhere. This is a very important motion highlighting the huge inequalities, injustices and exclusion faced by people with disabilities. All of us as Deputies are hugely aware of the impact of this on people with disabilities. We hear from people with disabilities and parents of children with disabilities all the time who have been let down badly. We hear about children waiting for assessments for years before they can get any supports, children who when they finally get their assessments get minimal levels of support, parents who cannot afford to get private support for their children being woefully left behind and parents being left in the dark and not getting the information they need to support their children. All too often, we hear from families trying their best to support their family members with disabilities who face other challenges. I was contacted recently, for example, by a parent who is struggling to get supports for her child and who is living in a single room in her mother's house with her partner and two children because they cannot afford to rent privately at the moment.

As the Social Democrats' housing spokesperson, I will focus on the impact of the lack of proper financial supports for people with disabilities on housing. Deputy Cairns referenced earlier the excellent report by the Ombudsman, Wasted Lives:Time for a better future for younger people in Nursing Homes, which found that more than 1,300 people with disabilities aged under 65 are living in nursing homes that are completely inappropriate for their needs. One of the key findings of the report was that personal finance was one of the key issues facing people with disabilities living in nursing homes. The report said that disposable income of people with disabilities fell by 7.4% between 2010 and 2015, a drop of more than €1,000. I will list a few examples from that report regarding how this directly affects people. The report states:

Charles is a 53 year old man with a progressive neurological condition. He has been in a nursing home for just under two years. Prior to this, he was living in council accommodation. Because he is unhappy in the nursing home, he continues to pay rent for his council accommodation, even though it is not wheelchair accessible.

It goes on to state, "He says that he has very little disposable income and his parents assist him with expenses such as clothing". This is a 53-year-old man.

The report goes on to highlight the case of Liam, a 52 year old man with a rare progressive neurological condition. It states:

Liam had been attending swimming outside the nursing home and he enjoyed this but he said that he had to pay for the swimming pool and for transport to and from the pool. He stopped going as he felt that he could not afford this. His activities are now very limited.

The report continued with the example of Rose, a 52-year-old woman with a brain injury. The report stated:

When my Office visited Rose, she was visibly in a lot of pain and she said that she had hurt her lower back. Her advocate was present and suggested that she attend the Accident and Emergency Department. She said that she could not afford this. The nursing home had assessed her and told her that she would need to be accompanied by an escort if she left the nursing home, due to difficulties with her mobility. The nursing home charged €23 per hour for this escort [which she could not afford].

Another example in the report is the case of Leah, a 49-year-old woman with multiple complex diagnoses including physical disability, intellectual disability and cancer. The report states:

Her wheelchair is too big for wheelchair taxis and so she needs a minibus to get to hospital appointments. This costs €300 or €500 per trip, depending on where her appointment is. ... Leah's mother advised my Office that she had to subsidise Leah but this was difficult as she was in receipt of an old age pension ... Leah is [therefore] restricted to her room.

That is the lived reality of some people with disabilities in nursing homes who should not be there. One person was paying their rent to the council for social housing they could not physically access. Another person who was in pain and needed medical care was unable to access that because of transport costs.

Yesterday, the Tánaiste said that there should not be time in the Dáil to discuss motions like this. That is what he said. I want to say in the strongest possible terms that these motions are needed. We do need time in the Dáil to discuss these issues and highlight this. We need action from Government on this because it is just not acceptable in a modern republic that people with disabilities who need medical treatment cannot afford to get it and that a person had to stop the one activity he was enjoying, namely, going swimming, because he was not getting sufficient financial support for that. That is not acceptable.

I also thank Deputy Cairns for bringing forward this motion and welcome all those in the Gallery and those looking in today. We have all heard the saying that a disability does not disable someone; society disables people. It is an important point to acknowledge today because it is clear that the skyrocketing cost of living everyone is seeing at the moment is making life very difficult, particularly for people with disabilities. We want the Government to step in and support those people. Disabled people are among those who experience the cost of living crisis most acutely. The cost of disability in Ireland report published on 7 December 2021 found that the additional cost of disability ranges from €8,700 to €12,300 per annum. As a result of this cost, the gap is widening between the standard of living a disabled person will experience compared to that of someone without a disability.

Over the past number of months, the Social Democrats have raised the cost of cancer, back-to-school costs and the rising cost of living in many of our Dáil contributions. People across Ireland are all experiencing financial hardship but the added cost of disability on top of this really makes this struggle very deep to the point of impossibility for many.

In ratifying the UNCRPD, Ireland committed to providing the highest attainable standard of healthcare for people with disabilities and comprehensive housing and rehabilitation services to enable disabled people attain or regain maximum independence. The living experience of any single person with a disability in Ireland, however, shows that we are very far from attaining that vision.

I want to discuss the cost of disability in the context of our substandard healthcare service and how this takes away from the maximum independence we have committed to attaining for disabled people. I have worked with a number of constituents in Wicklow who are struggling to get the basics, that is, new wheelchairs when their existing ones are broken down. The system in the HSE for getting a replacement wheelchair is long and arduous meaning those waiting are less independent and more isolated from society. Only this week, I received a letter from a local man who is a wheelchair user. He has been waiting over five months to hear back from the HSE about a new wheelchair as his current one is broken. He says he no longer feels safe when using his wheelchair and told me "this wheelchair may not mean much to you" - meaning the HSE - "but it is my freedom, my way of getting into the community. It is my legs." I also want to mention Leo Dixon, a brave and inspiring young boy from Arklow who was forced to travel to Leinster House with his family to ask for a wheelchair. I find it very hard that we are forcing people whose focus should be primarily on their families and looking after each other to come to the Dáil to ask for basic services. We need to move away from that and the investment needs to be there to ensure they do not have to do that because there are many stories likes that of Leo Dixon and the man I mentioned. It is happening all across the country because the Government has failed to put in the systems to make sure that costly equipment like wheelchairs is provided in a timely way in order that people can get on with their lives. We need to radically improve health and care services for people with disabilities in this country.

In terms of implementing disability policy, the Government is incredibly slow to ensure that the rights of disabled people are vindicated. Just drafting disability legislation or policy or signing up to a UN convention is not enough. We need State-backed resources to ensure these policies are implemented. Disability organisations, including Sunbeam House in Wicklow, are expressing their deep concern at the pace of planning for the implementation of the disability capacity review to 2032.

This plan was due to be completed in December 2021. No publication is in sight, despite the budgetary process being under way. An action plan is urgently needed to make sure that the important recommendations in the review are carried out.

The action plan to implement the cost of disability report still has not been published. Furthermore, Ireland still has not signed up to the optional protocol, which would enable further accountability of the Government on disability rights on services. Now is the time for a clear commitment and a roadmap by the Government on the publication, implementation and resourcing of these crucial policies.

I also want to briefly mention, as spokesperson for climate action, that as we start moving towards a zero-carbon society, we need to make sure that those who are least able to make those the actions that we require are supported. That includes people with disabilities. I have mentioned this to the Minister for the Environment, Climate and Communications. Policies and legislation need to be done in conjunction with people with disabilities and with those who have lived experiences in order that the policies can best reflect what they need.

I hope that the Government can speak to all those who are attending the Gallery today and that it has something concrete and tangible to contribute. We are asking for action in this area. I want to acknowledge the hard work that has been done by many disability activists who have been campaigning for an equal footing and for an equal standard of living, to which they are entitled.

I also wish to acknowledge the people in the Gallery and pay tribute to the work they do in advocating for equality and inclusion. I thank the Social Democrats for tabling this motion and for providing the opportunity to speak on the challenges that disabled people face with additional cost of disability and the level of unmet need.

The Indecon cost of disability report confirmed what was widely known but frequently not acknowledged, namely, that there is a significant additional cost to disability. This is the extra spending that a disabled person faces in dealing with day-to-day life that non-disabled people do not, in order to achieve the same standard of living. The cost of disability report states that the average additional cost of disability for a person with a disability, depending on its severity, is anywhere from €8,700 to €12,300 per annum.

Currently, the rate of poverty and social exclusion for disabled people in Ireland is one of the highest in the EU. We also have the lowest employment rate of persons with disabilities in the EU. Why is this the case? It is because disabled people fear the loss of, or severe reduction in, their core payments and secondary benefits if they take up employment. The loss of the medical card is especially worrying for disabled people. This is a disincentive to work. It keeps disabled people in a poverty trap.

One woman who came into my constituency office this week said that she had been told by the Department of Social Protection that she would not lose her reduced disability payment if she returned to work for one or two days per week. Guess what? She lost it. She ended up receiving the same income from work as she lost from the social protection payment. Yet, she had the extra cost of transport to get to work. There is therefore no incentive to work.

Disabled entrepreneurs and disabled artists are particularly discriminated against, because the entitlements to employ a disabled person are not afforded to the self-employed to employ themselves. They deal with the loss of payments on a continual basis. There needs to be a cost of disability payment immediately.

A year ago I, and indeed others, called for the publication of the capacity review. We all welcomed it when it was published. This identified the scale of unmet need, which is significant. We were informed in April 2022 that an action plan for implementation was being finalised. We are now three months on and there is no sign of this action plan.

The United Nations Convention on the Rights of Persons with Disabilities was ratified in this country in 2018. This underpins the rights that individuals should expect to have realised, irrespective of the nature or the complexity of their disability. However, children are not being supported, whether this is through primary care or the children’s disability network teams. There is an insufficient number of places for children with additional needs in our schools and, in particular, for autistic children. The right to live independently with the choice of where and who to live with is extremely important. It is underpinned within the UNCRPD. However, thousands of people are still living in congregated settings, despite a Government commitment to transfer all of those people into accommodation within the community. Approximately 1,300 people under the age of 65 are living in nursing homes. The practice of putting people into nursing homes continues. In addition, there is an unquantifiable number of adults living with aged parents in the family home. They have no choice but to remain there. Many of these adults have been on social housing lists for perhaps ten to 15 years. They have no prospect of being housed any time soon. The parents are anxious from the time the child is born until they are in their 80s or 90s about what will happen to their son or daughter when they pass. This is because proper provision has not been made for the person to live independently and to be supported in their community, as is their wish and their right.

I know of one woman whose daughter was in her 40s. She had complex needs. She was on the social housing list for years. When her mother became ill and ended up in hospital, she spent her time doing the lottery. She was hoping against hope that a win would mean she could provide for her daughter after her day. Suitable accommodation is not provided when the disabled person is young. Instead, it is left to this emergency situation, when the person is trying to deal with the grief of the loss of a parent, as well as coping with moving into an unfamiliar setting.

A number of issues require addressing immediately. One of them is workforce planning, because the level of recruitment and retention within disability services is dismal. There is an urgent need for pay parity within section 39 organisations. There has to be cross-departmental co-operation between Departments, but particularly between local authorities and the Department of Housing, Local Government and Heritage, with the Department of Health and the HSE, to provide suitable accommodation for disabled people who wish to live independently. Personal assistance service needs to be made statutory and needs to be properly funded.

I have limited time to speak on these issues. I feel that I am not doing the people affected by this issues justice, because I could speak for hours about any one of them. Yet, words are not important; action is needed here. I fully support the motion but we need action on these issues.

If ever there was a case which showed that the two-tier system of providing healthcare in Ireland, as well as the lack of Government dealing with an issue, it is the case of Alexis O’Mahony, who is a six-year-old girl living in Killarney. She has a pyruvate dehydrogenase, PDH, deficiency. She has a brain injury. She has cerebral palsy quadriplegia. She has visual impairment, the subluxation of her hip and a high risk of aspiration. Her family applied for a grant from the local authority. They were told that because of a Government decision a number of years ago, the local authority can fund the structural works in the rafters but cannot fund the equipment for a ceiling track hoist in order that she can be lifted. She needs daily washing and turning to avoid her getting bedsores. This is taking a massive physical toll on her family. In April 2021, they asked about this and were told that negotiations are ongoing between the Department of Health and the Department of Housing, Local Government and Heritage. They asked again in July and got the same answer. They asked again in October and got the same answer.

In May of this year, we submitted a parliamentary question, to which I have the reply to hand on my phone. It starts off by saying that the HSE and the Government are committed to providing disability services. It concludes by saying that they will reply directly as soon as possible on whether she can be helped. There is still no reply. There has been no decision. Somebody needs to grasp the nettle on this. Negotiations are ongoing between various Departments. In the meantime, her family have to lift her and turn her five, six or seven times per day.

I commend the Social Democrats on tabling the motion to allow us to put extra pressure on the Government in this regard. This is an issue whereby people who are not directly affected and who can afford the extra €8,700 per year, as stated in the motion, come to my office and tell me that while they can afford it, an awful lot of people cannot and they would like to advocate on their behalf. This is therefore an issue whereby people are so upset by the lack of the development and the lack of services being provided to other people that they come to us to ask if we can help to sort them out. The case of Alexis O’Mahony shows that nothing is being done about it.

I note that the Economic and Social Research Institute, ESRI, states that lone parents who cannot afford it, and working-age adults with disability have higher rates of poverty, deprivation and consistent poverty. They are more likely to have urgent housing needs. They are more likely to have intensive healthcare treatments and because of those costs they are falling behind.

I too commend Deputy Cairns and the Social Democrats on tabling this motion.

The latest data we have from the survey on income and living conditions were published in May. While the Minister of State was quick to welcome the reductions nationally across the rates for the key social inclusion indicators, those same data alarmingly show increases across the board for people with longstanding health issues, as the Central Statistics Office, CSO, calls it. The figures relating to who is at risk of poverty are up to 39%. The deprivation rate is up to 39.6%. The rate of consistent poverty was up to 19.2%.

Almost one fifth of people in Ireland today with a disability live in consistent poverty in one of the richest countries on the globe. That is a shameful reality in this day and age. It is more shameful that the income supports on which these individuals rely are set well below the poverty line. As was mentioned already this morning, the low levels of employment are typically due to the simple fact that there is a real fear about losing those income supports and, in particular, losing the medical card

We got an insight into that last week when disabled artists and academics presented to us in the audiovisual room. They are afraid to display their talents and gifts for fear of losing their income supports. If they win money in prizes or bursaries, it impacts their disability allowance. All work and income from that work hugely impacts people when it comes to the disability allowance as regards holding on to the medical card, to give one example. If someone with a disability is offered more hours or a promotion at work, that person actually has to step back and think about whether he or she can take that promotion. People could be doing really well at work but must ask themselves whether they can take it because they will lose their additional supports. That is not a position into which anyone should ever be put.

The cost of disability in Ireland report is really important. It was published seven months ago and we still have not seen that implementation plan. Of course, this is not the first cost of disability plan to be published. Indecon published one 18 years ago. There was one published 36 years ago in 1986. This upcoming budget cannot leave out the cost of disability payment and a recognition of that. I welcome what was said about restructuring the long-term disability payments. Domiciliary care allowance needs to be included in that review.

I commend and thank Deputy Cairns and the Social Democrats for bringing forward this important motion. The Opposition is united on this issue. However, here we are again having a debate on another motion. What the people in the Gallery demand and need today is to see the urgent action that is required to help people with disabilities to have a better quality of life.

As was said already, the average cost for a person living with a disability is between €9,000 and €12,500 per year. This is just the average cost. Some people are paying much more. Currently, the rate of poverty and social exclusion for people with disabilities in Ireland is one of the highest in the EU. We also have one of the lowest employment rates for people with disabilities in the EU. Institutionalised barriers to education have resulted in disproportionately lower academic attainment for people with disabilities.

I speak as person who is living with a disability. The Minister of State and I had this conversation previously. I can testify that I have had to face many of these barriers to get the basic services and supports I need just so I can get on with my life and have an improved quality of life.

The marginal increases that were introduced in the budget in 2022 for disabled people have been wiped out by inflation. Additional expenses to living with a disability are not recognised by the State, which means that people with disabilities are often caught in a poverty trap. The lack of public services for children with disabilities is also pushing people into poverty. In my area, for example, as the Minister of State knows, there are huge waiting lists for people trying to get occupational therapy, speech and language therapy, psychology and dietetics.

We heard from representatives from the Quarryvale Family Resource Centre from my area when they appeared before the Committee on Children, Disability, Equality and Integration this year. They spoke about how parents are accessing the food bank in the area because they have to get the supports privately that they should be getting publicly, and it is pushing them into poverty. A figure of 17% of people who used the food bank to feed their families cited the reason for doing so as increased health costs, including having to pay for private assessment needs and speech and language therapies. Imagine having to put yourself into debt simply so that your child has a chance to reach his or her developmental milestones.

I welcome the guests in the Gallery. I thank the Social Democrats and Deputy Cairns for bringing forward this important motion, which we will be supporting. It is one of the many motions on legislation on the rights of people with disabilities we have debated recently in the House. Far too often, these life-changing issues are raised before the Dáil but to no avail. If the Government will not listen to the Deputies who raise these issues on a daily basis then it must listen to the 150,000 people on disability allowance and, indeed, the people in the Gallery today.

Currently, the rate of poverty and social exclusion for people with disabilities in Ireland is one of the highest in the European Union, resting currently at 38.1% and rising. People with chronic illnesses or disabilities are more than twice as likely to be at risk of poverty than other adults and approximately twice as likely to experience basic deprivation and constant poverty. From employment to sport to accessing transport, people with disabilities face additional risks of social isolation and discrimination. The hardship and pain caused by these barriers is socially and morally unjustified. We also fail to value the skills, talents and resilience of people with disabilities and what they bring to the table.

I have spoken many times about the Families Unite for Services and Support, FUSS, group in County Wexford, which campaigns for their children's rights. When will that group and the 445 children awaiting disability services in County Wexford see proper services provided to them? When will we see the vacancies in occupational therapy, speech therapy and psychiatry in the county filled? This motion calls for a plan to fill the 732 vacant posts for therapists and provide a service for children with disabilities. I cannot stress enough today how urgent this work is. The services and those trying to hold them together are worn out. They cannot continue like this. Then, there are also services like Windmill in Wexford town, which supports 55 people with intellectual disabilities and their families. It contacted me last week to outline how important the publication and resourcing of the action plan to implement the cost of disability in Ireland report is, for which this motion calls.

It is imperative that the Minister of State gives a clear and concise commitment today on this publication and a decisive timeframe for delivery. When we speak about these issues, we often miss the most important things of all. We are missing out on the supports needed for children to flourish. We are missing out on the adult who just needs that little bit of extra support to be able to live independently and take his or her rightful place in society. We are missing out on the potential of artists with disabilities - musicians, painters, writers - and our Paralympic athletes. Recognising the rights of people with disabilities and providing support is an essential part of all our well-being. Let us do that today by supporting this motion before the House today on the cost of disability.

I welcome the opportunity to speak on this motion this morning. I commend Deputy Cairns and the Social Democrats on bringing this motion forward. I also welcome the people in the Gallery. I remember being here in 2018 when we ratified the UNCRPD, although the optional protocol was kind of left out of it.

I listened to all the speakers today. From my own experience, unfortunately, a disability is just a label for people because this is not about what condition a person has; it is about what rights a person should have. That is the difference. We are not giving resources to those people who need extra sources and, therefore, they are labelled, tagged and tucked into a corner.

I spoke in the previous Dáil about a gentleman in his 60s who is a double amputee. Like one of the other speakers said earlier, people often have to come here to the Dáil to get something. This gentleman had an electric wheelchair but it was broken. The HSE said it did not have a budget to fix it. We actually went on local radio to raise awareness and a fabricating company in west Cork said it would fix it. The HSE said it would not stand over it because of insurance. That man spent six months in a reclining chair before we had to come in here and raise the issue with a particular Minister before things were done. That is not the way to do business for people who want fairness, respect and equality all in one go.

I wish to mention a good friend of mine who was involved in politics on the other side for many years, who through her own life experiences started up a summer camp. That will be 30 years ago this year. It started with three or four children and they now have more than 250 children and nearly 400 volunteers. They run a summer camp every year in Midleton. Ms Margaret Trundle deserves a massive amount of praise for her work with friends and families of people with intellectual difficulties.

Going back to this motion, unfortunately, we are in the Chamber again discussing people with disabilities. As the Minister of State mentioned earlier, it is about having a bit of joined-up thinking and engaging with all the services but also with local authorities. Another gentleman in his 60s, who asked not to be named or identified because of embarrassment, is in receipt of the housing assistance payment, HAP. We sometimes hear Government members say we have great increases in disability allowance or the invalidity pension or whatever but this gentleman pointed something out.

I will read what he said:

Cork County Council obliges me to notify them of any changes of my circumstances. Whereas my bank statements have shown the council that I nonetheless did experience a pertinent material change in circumstances in the last annual budget the Government increased my weekly disability allowance by €5. When the council scalded me by phone for not advising them earlier of this change of circumstances I said I was unaware that central Government welfare increases counted. Taking account of the €5 increase in my disability allowance, the council increased my official weekly rent contribution by exactly €5.

That is giving with one hand and taking with the other. Now, with inflation going up, these people are going backwards.

I have spoken to many people and have listened to them. When I was on the town council we brought in service users to discuss mobility. When we did our streetscape, and it is not finished yet believe it or not, the section we completed won a European mobility award. That was because we listened to everybody and took account of what everybody needs. That is how it should be and that is what this motion is about. It is based on the needs of people. However, it is not even just the needs, it is the fairness that is missing here that is really annoying. I look at the Gallery and I see each of the people there. It is all about being treated with respect. In this day and age, why should any of those people have to beg for what should be an initial right? Everything should be given to them on the basis of their needs, not on the basis of their means. I support the motion.

I thank Deputy Cairns and the Social Democrats for tabling this timely and important motion. I also welcome our visitors in the Gallery for this debate.

In the last few days, when I became aware of this motion being brought forward and after engaging with groups I have been speaking with for many months, I asked them what areas they would like me to focus on in my contribution. The response was the disability capacity review and the action plan therein, as well as the section 39 workers in the area. We fully support the cost of disability requests in the motion. The argument for them is unanswerable, and I will not repeat what has been said previously.

I will focus on the disability capacity review action plan and the residential supports therein. What is galling everybody about this and the lack of progress on an action plan is that the disability capacity review was not put together by organisations represented in the Gallery or by Sinn Féin, the Social Democrats, the Labour Party or some independent group. This report is the Government's report. It was published nearly a year ago; we are nine days shy of the first year anniversary of when it was published. We were supposed to have an action plan by the end of 2021. There was an announcement in April that a plan would be published but, nigh on a year later, it has not been published. The figures in the capacity review are massive and they are not being contested. Nobody here or in the Gallery is contesting the figures. They are huge. The figures for unmet need are through the roof across the range of services - residential services, day services, PA home help, therapies, respite care and community services.

The lack of an action plan being published, debated and, most importantly, being delivered is a source of unbelievable frustration and increasing anger, particularly now as we are again in the midst of a cramped and crowded Dáil schedule as we hurtle towards another Dáil recess. Even if this is published within the next nine days, the Dáil will go into recess. It will be back in September and then we will have a budget that is being brought forward to 27 September, which means that it will be cramped to have time to debate it then. Time for much-needed debate on this is eking away. In fact, this two-hour debate is the most time we will get to spend debating this issue between now and the recess and probably before the next budget, which is why this is so important.

With regard to the budget, and I ask the Minister of State to hear this loud and clear, can it be an accessible budget announcement for people with disabilities, so individuals with disabilities, their supporters and the groups can understand how many existing and new supports, be they residential, day places or respite supports, will be provided in budget 2023? Do not bamboozle us on the day with grand announcements on workers, therapists and places and not make it clear in the announcements what are existing and what are new. Most importantly, the Government has to tell us how it is going to deliver them. It is no use saying the Government is going to allocate €500 million for 200 residential supports or X amount of therapies when we know the workers are not there. Let this budget be a new departure in terms of how it is announced, how it is published and how it is discussed. None of us, whether we are in the Chamber, in the Gallery or at a work desk at home, wants to be scrambling around amidst a very deliberate forest of misinformation.

I would like to see something clear regarding residential supports within the action plan. In its submission to the Department on this, the National Federation of Voluntary Service Providers has set out clearly what needs to be done and what recommendations should be included in the action plan. Last Friday, I visited an Irish Wheelchair Association day service in Balbriggan. A young man there, Conor Dillon, just before we had our conversation, wanted to know about his long-term housing needs. As a man and a human being he needs to know, but he does not know what is going to happen when his parents pass away. He is young and his parents are still relatively young, but that is what he is thinking about now. As I said, we had not even settled into the discussion we were about to have, which was the most powerful two hours I have ever spent in the company of any other human being. I was with Conor, Naomi and Louis that day. We cannot articulate any louder or clearer the need for the action plan to be published. The Minister of State knows the groups and the individuals that have to be consulted on this, who will be able to talk to the many disabled people and their family support networks. They need the information from the Minister of State as soon as possible.

Yesterday, workers in the Irish Wheelchair Association were out on strike. It is a section 39 organisation. This is going to be the start of what I believe will be a summer, autumn, winter and beyond of discontent if the Government and the HSE do not take real control of this. These are the Minister of State's workers in every meaningful way. When someone presents to the State as a disabled person and says he or she needs assistance, respite care, a day service, a night service or a therapy, the State goes to these companies or organisations. The State cannot provide the services through the HSE service so it asks them to provide them, and they step in with their workers, who are on brutal pay and brutal conditions. The organisations are unable to keep staff. The staff are going to the HSE. The HSE is then unable to keep staff because the staff are either going to private healthcare providers, who, by the way, are coming around back into the sector to provide services because of the emergency element to the care that is provided, or they are going abroad to work elsewhere or they are going to other sectors. We are losing staff everywhere.

The Minister of State cannot wash her hands of this. These are her workers, except when it comes to pay and conditions. That is when the Government says "No" and that it is down to the organisations themselves. When I met Prosper Fingal this week with Deputy Bacik, that was its ask, as well as the disability capacity review. This organisation is just one provider of disability services for intellectual disability in my constituency. It is struggling to get much-needed workers and struggling to retain them. This is a blue ribbon organisation, one of many that exist throughout this country. If it or the Irish Wheelchair Association or the other organisations did not exist tomorrow, our health service, which is already in crisis, would absolutely flounder on the floor, and the people who would suffer are disabled people and their families and support networks. The Minister of State and everybody here know this, yet we remain without an action plan and we retain a hands-off approach to sections 38 and 39 organisations. In a cost-of-living crisis and in every other crisis, we are happy to allow them to flounder and struggle in an environment that is absolutely crippling them. It has to stop.

I thank the Social Democrats for tabling this motion. It is very worthwhile to debate what is going on with disability services. As the Minister of State knows, people who have a disability are twice as likely to face discrimination than me and her. That is a fact. They will face discrimination in respect of consistent poverty, deprivation, isolation, employment, access to public services and housing. Those who have a disability who try to access housing is one of the key issues. There is a dearth of housing in South Dublin County Council for those who have a disability. I could tell many horror stories regarding those who have a disability who cannot get access to proper housing. The situation in South Dublin County Council is not an isolated one. I am sure it is the same throughout the State.

On income and disability, the disability allowance is €208 per week. I always found it very weird that during the pandemic the vast majority of people got €350. That was the bar at which most people could live. The disability allowance should be far more than €208; it should be up to the level of €350. That should be looked at in the context of the budget. The cost-of-living crisis is having a major affect on those who are living with a disability. That has to be heeded.

I will touch on the local authority housing adaptation grants. The income thresholds for those grants are far too low. The cost of adaptations goes far beyond the grant that is currently available. There is also a knock-on effect as regards the cost of living. I know families who just cannot afford the adaptation they need for their children or themselves. The thresholds for the grants, whether someone is in a public local authority house or owns his or her home, are far too small. They have to be looked at because families are going into debt. Families simply cannot afford the adaptation, or have to cut back on certain modifications, and sometimes it takes a long time to get these grants. I would like the Minister of State to look into that because it is very important for families, adults and so forth.

There are many other matters I could mention. I do not understand why we have not ratified the protocol to the UN Convention on the Rights of Persons with Disabilities, CRPD. Only two other countries in the European Union have not ratified it. The action plan needs to be published without delay. That is very important. As I said, the income for those who are on disability or illness benefits has to be reviewed. That is probably out of the Minister of State's remit, but she will understand where I am coming from. For somebody who is on such payments for a considerable time, it is not a huge amount of money in the context of the cost of living in Ireland. It is actually very small. Some people want to contribute but sometimes, because of circumstances, they cannot, due to their disability. The disability allowance should be looked at. It should be much further north of €208 and closer to the level of payments made during the pandemic.

I welcome the opportunity to speak on this very important matter. I compliment my colleague on the Joint Committee on Disability Matters, Deputy Cairns, on tabling this motion. It follows on from a motion the Regional Group tabled a number of months ago. It is important we keep this matter on the agenda. Since this debate began, we have heard the Minister of State say that the Indecon report set out that the cost of living, above and beyond normal living, for people with disabilities is in the region of up to €12,000 per annum. That report was done some time ago. Increases in the cost of living mean that sum is probably more now.

The question is how we will address this in a meaningful way. Disabilities are very complex. We cannot just have one-size-fits-all. The Minister of State will be aware of Councillor Gabe Cronnelly in County Galway. He lives in Athenry and is a local county councillor serving on Galway County Council. He is an amputee. Of the 900-odd county councillors in the country, he is the only one serving who is an amputee. As he is getting a salary from the county council, he is unable to get any support to replace his prosthetic limb when he needs to do that. Last week, he got a quotation of €38,000 to replace the prosthetic limb. It is guaranteed for five years. It will, therefore, cost him €7,600 per year, in addition to the maintenance cost to maintain that limb. He has to pay for that himself. The reason he has to do so is he is over the income threshold to get a medical card. One of the questions he keeps asking me is how the discretionary medical card is defined. How is it defined? How do people know whether they are entitled to one on a discretionary basis? It seems to be open-ended without any particular way of adjudicating on it, other than being left to discretion. That is it.

Anybody who has a disability should be entitled to a medical card, full stop. Somebody who has a permanent disability, such as an amputee, should be entitled to a medical card for life. As Councillor Cronnelly often says to me, his leg will never grow back, therefore, he should get the medical card. It is as simple as that. If people who are amputees were given medical cards, the cost of the prosthetic Councillor Cronnelly needs to get this year would be borne by the State. We are supposed to encourage people from the disability sector into politics and public life. This is a case where Councillor Cronnelly cannot afford to get involved in politics because any money coming in from the few pounds he gets as a councillor is actually penalising him. It will cost him €38,000 over the next five years to get the prosthetic limb in place, which he needs. The parts are guaranteed for six months, while the prosthetic overall is guaranteed for five years. In the meantime, he has to pay for any maintenance or any parts that break after five years. When we talk about the cost of living with a disability being in the region of €12,000, that is a generalisation. We need to individualise all this to make sure people who really need assistance get what they are entitled to under the UN agreement.

I welcome Jackie and Emilie who are in the Gallery with others to listen to the debate. They are people who are living with the experience of disability and their families. It is important to state that over the past two years the Joint Committee on Disability Matters has heard from people with disabilities and their families who have recounted their experiences, which are not very good and are not improving. Money is going in but the output is not coming around. The results are not there.

Disabled Artists & Disabled Academics, DADA, is a particular group. When a disabled artist applies for a grant or bursary to do some project, their disability allowances are taken as means. That is absolutely wrong. If we are to encourage people back into work, and to use the skillset and special skills they have, we should encourage them by giving them, possibly, a double bursary and not touch their disability allowances. These should not be touched when we give people a bursary, support or grant. A scheme for disabled artists with disabilities should remove income earning limits and allow them - this is from the artists themselves - to keep their core payment, such as the blind pension, disability allowance or invalidity allowance, to pay for their disability and compensate them for reduced earning powers. Anything like that, where people with disabilities get support and allowances, should not be touched.

These people are very fearful as to whether they will retain their medical cards when they apply for certain grants or for bursaries to enable them to do projects. As a result, we should be safeguarding the provision of medical cards on the basis of medical need rather than income thresholds. That is most important. Discretionary medical cards are causing major problems.

It is important that we look at how we can help people with disabilities who want to help themselves and engage in living their lives and being independent, whether it is through employment, self-employment, music or the arts. We must encourage them. We should not put barriers in the way of their progress. We must ensure that disabled artists can perform in front of people and can spend time completing whatever works they need to enable them to live independently. We must ensure that any grants provided to people with disabilities are treated as something that they are using to give back to society.

We have put many barriers in the way of people with disabilities. We need to strip all that back, whether it is in the area of social welfare, arts grants or disability payments for housing adaptations. We must front-load supports in order to give people the opportunity to complete the necessary works to enable them to live independently. I know of a young woman in Tuam. She was a child when I first met her and is now 18 or 19 years of age. She is still awaiting the completion of an extension to her council house. She is in a wheelchair and cannot have her friends round to visit because there is not enough space in the house. There is a kitchen and a living room, and that is about it. We must ensure that we treat people equally and with respect. The Minister of State has been active in getting things done. I ask her to listen to disabled artists and Gabe Connolly. We must make changes now that will have a good effect on people.

I thank Deputy Cairns and the Social Democrats for bringing forward this most important motion in such a timely fashion. In particular, I wish to highlight the plight of the Kerry Parents and Friends Association, which is based in the Old Monastery in Killarney and which is run by Ms Marie Linehan. I pay tribute to Mr. Tony Darmody, who gave so much of his time to the organisation over the years. I am asking for the immediate publication of the action plan on the disability capacity review and its inclusion in budget 2023 to ensure that another year does not pass with families and individuals left without any indication of when or how the urgent needs that they are experiencing will be met. An accessible disability budget must be announced in order that individuals with disabilities and their families can understand how many existing and new residential supports, day-care places and respite supports will be provided for in budget 2023, and how this relates to the needs set out in the capacity review. The Kerry Parents and Friends Association is classed as a section 39 organisation. It receives a lot less funding for the organisation and its workers than it would if it were a section 38 organisation, even though it is doing the same work. The association is helping people with disabilities in places like Gneeves, Gullane and Faha whose parents are now in their 70s and 80s. If it were not for this wonderful association, these people would be completely lost. I ask the Minister of State to publish the action plan on the capacity review as soon as possible, so that people know where they are at.

Ms Marie Linehan, the excellent CEO of the Kerry Parents and Friends Association, contacted all of the Oireachtas Members in County Kerry with regard to this much-needed action plan, which the Minister of State knows needs to be published as a matter of urgency. The roadmap and schedule of works, as it were, must be published. It is urgently needed for both the service users and the parents of service users in County Kerry. I wish to highlight the excellent facility at St. Mary of the Angels in Beaufort, and the fact that it is being closed by stealth. We have discussed the matter previously. As the Minister of State is aware, no new residents are being admitted to the facility. This beautiful facility was created many decades ago by the very generous Beaufort family, who gave over their land for the provision of services for disabled persons. It is a centre as excellence, and I have regarded it as such for many years. I ask the Minister of State to keep this centre of excellence open for the great people from Beaufort, Killorglin, Killarney, Faha and Fieries who have worked there for generations and who provide great services there. It is a dedication and a vocation. I ask that the centre remains open and is not closed by stealth, which is what is happening currently.

I also want the Minister of State to address the fact that we desperately need respite services for people who have disabilities and are being cared for, in many cases, by aging parents who need a break. We need more respite facilities in south Kerry. A certain number of services are provided in north Kerry, but it is not enough. We need more. People must be taken care of. More funding must be provided for disabled persons grants to allow people to remain at home, whether it is for adaptation grants for bathrooms and bedrooms, stair lifts or grants for the provision of mobility aids. The facilities must be provided to enable people to remain in their own homes. We also need more people working on the ground to deliver healthcare to people with disabilities who are living at home.

I welcome our guests in the Gallery. They are making a special effort. Tá fáilte rompu.

I thank the Social Democrats for bringing forward this important motion. I think of the words of the Tánaiste, the iar-Thaoiseach, who said that we are wasting time in here. He wants to shut down debate and deny the good people in the Gallery and their families all over the country the right to be heard. He said we should not be wasting time on debates like this. It is a very valuable and important debate. Our guests do not want to listen to empty words from me or anyone else; they want the services to which they are entitled. People with disabilities do not want to be discriminated against when they get a job or employment, or when they get a gig as an artist. I welcome Mr. Jackie Conboy, of the Music and Entertainment Association of Ireland, MEAI, to the Gallery. That is what we need. Has this country got to the stage now that it will not provide services? The Minister of State has failed utterly to provide any services. Yet, the Tánaiste lectures us and states that we should not even raise these issues in the House. Should we just shut down this Chamber and forget the people all together? The order to go to hell or to Connacht is back again.

There are many families on disability benefits. We heard earlier about the €5 increase in disability allowance and the €5 increase in the weekly rent contribution for a claimant on social welfare benefits. How cruel-hearted and cruel-minded have we become? The system is so unwieldy. I have read stories of families waiting for ten years to get supports. Deputy Verona Murphy recently highlighted the case of a child in Country Wexford who does not have a wheelchair that is suitable for him. We know about Cara Darmody from Ardfinnan, who fundraised for Ardfinnan National School and Scoil Chormaic Special School to provide access to services and therapies for students with additional needs. I salute the volunteer groups around the country, and, in particular, Positive Steps Together in Caisleán Nua. The organisation has set out on a journey to fundraise for a respite unit for the local people. These organisations do not want us to pay lip service to them; they want support. They want us, as advocates for them, to raise these issues here in the Parliament to which we are elected. We should not be shut down by the Tánaiste or anybody else.

I thank the Social Democrats for putting forward this motion, which I fully support. Indecon International produced a report on behalf of the Department of Social Protection looking at detail of all of the extra day-to-day costs faced by people with disabilities. An extensive survey, incorporating feedback from thousands of disabled people across Ireland, was completed by consultants from Indecon in early 2021 and a report was submitted to the Government. We have been told that each Department has since examined the report. However, it appears that the report has not yet been presented to Cabinet by the Minister for Social Protection, as promised. Four years after the research was first announced, not a single additional financial support has been made available to people with disabilities in Ireland. As every day passes, disabled people can justifiably feel that they are being left behind and that their inclusion is not important. Failure by the Government to publish and act upon the report prior to budget 2022 meant that the disabled people were not properly factored into the financial planning for 2022. Only for families trying their best to get support and put pressure on every Department, one wonders where people with disabilities, such as Mr. Jim O'Mahony from Kilbrittain and others, would end up.

The people of west Cork are trying to put together local funding to build an autism centre in the area. I must acknowledge what the Minister of State has done for the people in the area in fairness and the fact that she continues to engage with them to help them further their cause. They greatly appreciate that.

This is a major issue in west Cork. I would appreciate it if the Minister of State would continue with the good work she has been doing there so far.

We have other problems in the context of adults with disabilities who are growing up and living with their elderly parents in some cases, through no fault of their, own getting aggressive with their elderly parents. There should be services available for these situations. I can inform the Minister of State about some of them in my area. While Ireland is a great country for so-called inclusion, we should be ashamed of how our disabled people and families are treated here. The Parkinson's Association of Ireland will be before us today. Parkinson's is a disability in its own right. The association is looking for specialised nurses. It will be in the audiovisual room at 1.30 p.m. fighting that cause. It has had an uphill battle in this regard. I was contacted by a lady from Bantry this morning who has a child availing of services offered by CoAction. She has been looking for respite for four years and cannot get it. These are the issues people are facing on a daily basis. This is a difficult matter and it needs to be resolved.

Cuirim fáilte roimh na cuairteoirí thuas staighre agus gabhaim buíochas leis an Teachta Cairns as ucht an rúin seo a chur os comhair na Dála. I welcome and thank the people in the Gallery. Their work on the ground is recognised and is not wasted. There are more and more voices on their side in the Dáil. I know it is slow, but they are making progress.

This motion is a basic one. I understand that the Government is accepting it and that there is no amendment to it. The motion notes our legal obligations, it acknowledges what has been done so far with the reports, the capacity review and the cost of disability in Ireland and it asks for four specific things, which are very basic. The first is to introduce a cost of disability payment of at least €20 per week, which I will come back to. The second is to increase the disability allowance. The third is to publish an action plan pursuant to the disability capacity review, and that should be a basic action for the Government. The Government should also publish an action plan to implement the cost of disability. The fourth is to honour the programme for Government commitment to make the results of the cost of disability report part of Government policy.

Theoretically, we have made great strides. I will use Galway as an example. The Barcelona Declaration was agreed 20 years ago in order that we would stop the division and discrimination. We adapted the motto that good design enables and bad design disables and we passed the Barcelona Declaration. Theoretically, that was a brilliant step forward but the declaration was not implemented in full. When Covid came, it was simply thrown aside when we placed a major emphasis on businesses operating outdoors. The Barcelona Declaration has gone by the wayside. The same happened with the UNCRPD. A huge amount of time has passed since we signed it, although we have not ratified the protocol. The language in that document is wonderful, but we are still going on the basis of a piecemeal approach and charity as opposed to making that language a reality. As a practical example, if we had really embraced the Barcelona Declaration, it would have been uppermost when the Government encouraged businesses to move their operations out into public spaces.

The Indecon report was published in December. There is a background to that, as has been set out. Deputy Catherine Murphy mentioned a report from 1996. The one I have is from 2004. That report, also compiled by Indecon, related to the National Disability Authority. An estimated cost of €143 per week was outlined in it. In 2015, the Cullinan and Lyons report used the data from the survey on income and living and found that the average additional weekly cost was €207. Then we have the Indecon report. I will run out of time, but Indecon says that there is no single cost of disability due to a wide range in the severity of disabilities and so on. However, the figures are astronomical. They go up to €16,000 per year for those who have severe limitations as a result of their disabilities. The Indecon report goes on to say that income supports will not be sufficient and that there is a need for a multifaceted approach, which I fully agree with. I am worried that in the lovely speech made earlier, there was no commitment to an action plan, to production and publication and to making this a reality. I welcome that as I was getting out of my chair the Minister of State, Deputy Butler, announced that she intends to carry out an audit of respite services. She might clarify that point.

That is positive news. Respite went to the wind during Covid. A waiting list was not even kept.

I thank Deputy Cairns and the Social Democrats for bringing forward this motion. When we refer to the cost of disability, what are we talking about? We are talking about the extra costs that a person with a disability incurs in their day-to-day lives simply because they have a disability. There is something deeply unfair about that because having a disability in the first place is often a massive extra challenge for that person. In addition, they face extra financial costs. In most cases these are costs that they cannot afford. As I said, there is just something deeply unfair about that.

In the Indecon report on the cost of disability to which many previous speakers referred, an important point is made about the participation of people with disabilities in the labour market. The level of such participation is one of the lowest in Europe. Therefore, we have a double-edged sword because of the extra costs that people incur on foot of their disabilities. Due to the fact that the vast majority of them are not able to access employment, they cannot cover those extra costs. While it is not mentioned in this motion and while it is a separate issue, the fact that the number of people with disabilities in Ireland participating in the labour market is among the lowest in Europe is an extremely important issue. Not having access to work denies people the chance to be independent.

Because of the situation we are in, the State has to step in. It must represent society and the common good and provide the extra assistance that is asked for in this motion. I fully support the call for a disability payment of at least €20 per week in budget 2023 and for an increase in the disability allowance of at least €15 per week. Those are short-term measures that can be brought in when we get to September. Longer-term measures are outlined in the motion, which calls on the Government to look at the Cost of Disability in Ireland report and ensure that will inform policy decisions in the future, particularly as it is based on good information. The Indecon report tells us that households where a member has a disability spend an average of an additional €9,000 per year.

I was privileged to launch a report on the cost of disability with Family Carers Ireland and the Vincentian Partnership for Social Justice a few months ago in the audiovisual room. The report looked at the minimum essential standard of living for a two-parent household caring for an adolescent child who had a profound intellectual disability. It found that the extra cost - and this was detailed work - was approximately €12,000 per annum. As Deputy Connolly stated, extra costs vary across different types of disability. If people look at the Indecon report and its granular detail, they will see that families spend a higher proportion of their incomes on food, clothing, fuel, light, transport and household goods. We all know that the price of food, fuel, electricity and transport have significantly increased in the past 12 months. Households that have a member who has a disability are being hit harder by inflation and cost-of-living increases. That is just another reason why I fully support the motion tabled by Deputy Cairns.

I welcome the opportunity to speak on Deputy Cairns' motion. I also welcome the motion. I want to raise three issues. Week after week, the witnesses who come before the Joint Committee on Disability Matters talk about the medical card and the possibilities for people with disabilities if they were to get outside incomes. The medical card is gold for a person with a disability.

Their fear is secondary benefits would be removed for disabled artists, writers, photographers or whatever. It is hugely important that that is protected. We need a serious discussion on how medical cards are provided for people with disabilities and how they can be guaranteed into the future and not have to come back looking for information year after year.

Section 39 organisations and pay parity constitute a major stumbling block for people with disabilities and the lack of services. As we see regarding recruitment for section 39 organisations the length and breadth of the country, pay parity has to be a huge priority for Government because unless we get that rectified, we have an unbalanced system and a difficulty.

I refer to residential care for people with disabilities who have been on five days' care but, because family circumstances have changed, now need seven-day care. These are people who are getting on in years, as are their parents. I have had instances recently where some people in the HSE said when it comes to a crisis point, they would then look at it. Does everything have to come to a crisis point before a decision is taken? We have seen that in relation to many decisions. I made the point to the official that it is going to emerge as a crisis point, so why not avert it? It will have to be made anyway, but we have to have this crisis at every level. It is grossly unfair on the person, the families and the system to expect we have to go to a crisis at every stage. Why are we not dealing with it?

I have looked at the disability allowance and the income disregard and reached out to different groups. An innovative scheme, the rural social scheme, was developed some 20 years ago. There were income disregards in that to make sure people kept their entitlement to it. The disability allowance needs to be looked at in a major way to see what income disregards can be put in place. What can be done to ensure persons can keep their disability allowance even if they get therapeutic work, which it is in many instances? The model of income disregards in the rural social scheme can be used and should be looked at by Departments to ensure there is a better system. I could talk all day but time is up.

I acknowledge Gary Carney, John Dolan, CEO of DFI, and my good friend Jackie Conboy from Portumna, along with Emilie, who represents DADA. I thank the Social Democrats, particularly Deputy Cairns, for giving me the platform to have a conversation about this on the floor of the Dáil. The ongoing cost-of-living debate has a tendency to focus on other aspects of society but Deputy Cairns can be assured that I, as Minister of State for disability, and all my ministerial colleagues across Government are acutely aware of the significant cost, both financial and human, to disabled people and their families and how critical that is in the current context. The key to all of this is to look at all these issues through the lens of the UNCRPD. Disability is not just a health issue, but affects all aspects of one's life and the issues must be addressed holistically across Government.

In the time I have, I have to get to the nub of it in relation to Deputy Cairns' asks from Government. One ask is to publish the action plan and implement the disability capacity review, including setting out a plan to fill the 732 vacant posts for therapists providing services for children with disability. I will do that. I am within three or four weeks of providing that action plan around 732 posts. That will be done.

In relation to the cost of disability, I have signed off on it. It has gone to the Minister, Deputy Donnelly, and is with him. My officials beside me are meeting with the Department of Public Expenditure and Reform tomorrow on it. We are within weeks of having it published. It is not just an action plan; it is backed with money.

I have mulled over it for some time and think it talks to the piece that Deputy Duncan Smith spoke about, making sure we have proper signposting signage to tell us exactly where we can. I have put in extra pieces from early years right through to the older person to ensure that when we talk about residential care and respite, it is the whole package and, when one enters services, one can transition; and to ensure that when we look at respite, we also look at alternative respite and at what that looks like. When we look at transitioning to residential, what does residential look like? Is it supported and independent? Is it the complex residential piece?

Deputy Michael Moynihan is so right that not everything has to come to a crisis but, at the moment, there is not that forward-planning and capacity-building in the system and we need to have it. In the same way, when children hit the age of 17 they exit children's services but fall off a cliff and go nowhere. They have been used to respite and now go into adult services and there is no respite available for them. We need to look at that 18-25 piece, which I call the transitioning care piece, and that is put into it. I am putting in a proper ladder so when a parent gets the news they have a child with a disability or complex needs, parents know how the State supports them and how it can be done. This capacity review has it.

I take responsibility for the fact that it has been too long in publication, but there was a lot missing within in. There is no point in having a number such as that we need 800 emergency residential places today. How can we achieve that and build it in? How can we ensure we have equity of access, whether one is in Dublin, Cork, Limerick, Galway or Donegal? Everybody has to have it. Every county council has to have the same message. That is why in the publication of the disability policy within housing there is an acknowledgement that it is not working. However, when you start going forward, you have a UD. Is it UD-plus or is it plus-plus? Has that been built into it? Every county manager talks on the same page so there is no difference and when they take on a Part V, we talk about social, affordable and disability. It should not be limited. That is the piece I talk about regarding housing.

I do not want to give figures out but I know I need 740 houses today to stand still and move forward in relation to disability houses. It is the requirement in the health budget to provide the funding to ensure people have the supported independent piece or the complete 24-hour service. Then you are creating capacity. We need to start creating capacity at all levels, from the early years. The earlier you make the intervention, the longer you have and the less of a need on that critical piece because families do not get burned out or feel let down. We can only implement it if we have the money so the money is being sought as part of the Estimates process.

The motion calls on the Government to "honour the commitment in the Programme for Government: Our Shared Future to use the findings of the Cost of Disability in Ireland report to 'inform the direction of future policy'". Absolutely, it has to be. Deputy Canney spoke about prosthesis. Prosthesis is at the second highest level within the cost of disability, in terms of the cost for an amputee who does not have a medical card to replace it. At all times we have to break down barriers preventing people returning to the workforce. While I am only one Minister of State standing here, I have to work with all other Ministers because I have to talk about disabled artists, the disregard, the inclusion of them and how we can encourage positive involvement in the workforce without penalising, putting up barriers and breaking down those barriers. That is why I talked to the Tánaiste, the Minister, Deputy Michael McGrath, the IDA and IBEC to ascertain what the barriers are for people returning to the workforce. I am not talking about the cost of disability from the point of view of the Minister, Deputy Humphreys, in relation to those fundings. From talking to our officials this morning, that is an ongoing conversation within budgetary negotiations.

I have heard under-65s are going into nursing homes. That should not be happening and has been outlawed within the HSE. If a Deputy has a case of it, please tell me and I will take it up. We have put funding in to ensure people can be moved out. While it is slow, we are trying to build that capacity.

In relation to PAs, I did not wait for the development of the disability capacity report for the publication of the PAs, because I put sixfold into it in last year's budget to ensure we could give people choice to live where they want in the community.

There is no doubt that disabled people and their families find themselves at the sharp end of the cost-of-living crisis.

While all households have been affected by inflation, the fact of the matter is that not everybody starts from the same position. Even before the current increase in the rate of inflation, people with disabilities experienced one of the highest rates of poverty at over three times that of the general population. Too often, the needs of those with disabilities are shamefully neglected and viewed through a very narrow lens. Policy is not based on the voices and experiences of people living with those disabilities and their carers. If we were to shift that focus, it would quickly become clear that it is the way in which State services are structured and inadequately resourced that causes the most exclusion and inequality rather than the disability itself.

The assessment of need process is a clear example of this. The importance of this service cannot be overstated. It is supposed to be the first step in providing children with therapeutic and educational supports but the State constantly reneges on its obligations in this regard. Just yesterday, we heard that 4,000 children are waiting for a diagnostic assessment just to get a school place. This abject neglect has serious consequences. Delays in the assessment of need process not only result in many children being denied access to services, but also frequently mean that these children need more costly and complex interventions down the line as their conditions are allowed to deteriorate. By law, once an assessment of need application has been received, the assessment must start within three months and finish within a further three months but we know that this is simply not the case in practice. Some people have to wait years, and very often three to four years, for that assessment of need. This is a deplorable situation and it is the reason we must urgently ratify the optional protocol to the UN Convention on the Rights of Persons with Disabilities.

In those areas where early intervention and school age teams are still operating, many children are still waiting to be seen. These services are distinct from the assessment of need system and, crucially, no statutory timelines are set out in the Disability Act. Parents very often do not realise that when filing a complaint until they are told by the HSE. Wide variations in service regionally only add to the frustration for parents and to the sense of unfairness they feel. Access to adequate services should not depend on your address.

The delays in the assessment of need process also brings our two-tier health service into sharp focus. The failure to ensure assessments take place within a reasonable timescale means that many families are forced to go private. These families often have great difficulty in scraping the money together despite making sacrifices and frequently have to borrow the money. For many others, this is just not an option. The money is simply not there. It must be borne in mind that, the more this happens, the greater the pull factor for staff to go into private practice. I was concerned to hear the Minister of State speak at the weekend about her intention to outsource assessments of need. This will inevitably accelerate the creeping privatisation we see right across our health services. In addition to the pull factor I have mentioned, there is low morale among staff because of the high levels of stress and the high number of vacancies. All of that combines to make the job much more challenging. What is needed is a properly functioning and resourced universal public service that is available to all those who require it as of right. Difficulty with recruitment is not an acceptable excuse. It is a central role of a Minister to ensure proper workforce planning.

This stumbling from one crisis to another cannot continue. Instead, we must embed rights-based supports and services for all of those with disabilities. We need action now. This is not just about having a conversation; it is about looking for action from the Minister of State and her ministerial colleagues. We need to see that action as a matter of urgency.

This motion is about taking steps towards providing the changes we need to be a more inclusive and equal society. It is about the budgetary measures and policies that allow people to exercise their rights. The scale and depth of the issues are known. What we need is the political will. This budget must address the cost-of-living crisis but it must also address the cost-of-disability crisis. Even before the current crisis, it cost between €8,700 and €12,300 extra every year to live with a disability in Ireland. These figures are from the Government's own report, which supports everything which the people and organisations in the Gallery and watching at home have been saying for years.

A major component of the additional costs faced by disabled people and the families of children with disabilities relates to grossly inadequate education, healthcare, social welfare and housing services. A core pillar of Social Democrats policy is the provision of public services. In our alternative budget last year, we proposed the idea of universal basic services based on the principle that all people are entitled to a range of public services that are free at the point of use, provided by the State and funded through taxation. Public disability services are required now. They are central to respecting rights and empowering children and adults.

The disability capacity review outlines the considerable unmet needs in the health and care sectors. The review was published almost a year ago. Where is the action plan? Is this plan based on engagement with the disabled persons organisations, advocacy organisations, parents' groups and service providers? Any response to unmet needs in this sector has to work with the people most affected and service users. For too long, Departments have made decisions for people and not with them. Regrettably, we saw this again last week when the Government rushed through the Assisted Decision-Making (Capacity) (Amendment) Bill 2022 with little or no input from disabled people. We need a comprehensive and resourced action plan that responds to the needs identified and to larger systematic issues around the recruitment and retention of therapists and communication with families. The provision of the services people have a right to would be transformative. It would help children develop, adults gain independence and relieve the unimaginable stress and pressure that parents of all ages are under. The provision of appropriate local school places for children and young people has to be a pillar of this intervention. Members of the West Cork Special School campaign have travelled here today to highlight this key issue.

The cost of disability report also requires an action plan to adequately deal with the substantial range of matters raised. Social protection payments, healthcare grants and other supports need to be tailored to meet the needs of disabled people. This motion calls for a €20 weekly cost-of-disability payment across relevant payments, including domiciliary care allowance, carer's allowance and the invalidity pension, and an additional €15 for the disability allowance. These are the just the most basic increases needed to keep up with skyrocketing inflation. The Government has to outline a costed and long-term plan developed in co-ordination with disabled people to address the systemic and crippling cost-of-disability crisis. The 2023 budget will be focused on the cost-of-living crisis but it will also be crucial for addressing the structural barriers around disability. For too long, people have waited for proper homes, school places, therapies, respite and payments that cover household expenses. Unless there is a significant and impactful change of direction in the budget, the suffering, the exclusion and the denial of rights will continue unabated.

I acknowledge all those tirelessly campaigning for equality. Whether it is people who are disabled themselves, parents, carers, family or friends, there are countless groups and campaigns out there all striving for disability rights. I thank my amazing team, Tara Constantine, Richard Scriven and Claire.

I extend huge thanks to all the organisations that could make it here today, including Independent Living Movement Ireland, the Disability Federation of Ireland, Inclusion Ireland, Mental Health Reform, the National Disability Services Association, the National Federation of Voluntary Service Providers, AsIAm, Early Onset Parkinson’s Disease Ireland, the Down Syndrome Centre Cork, West Cork Special Schools, and the Irish Wheelchair Association. I also thank those who travelled from Cork South-West. Their presence is a testament to the work that needs to be done. The scale of issues and solutions are known. It is now up to the Government to act.

Question put and agreed to.
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