I will read a note on privilege and housekeeping matters before we begin. Witnesses and members are reminded of the long-standing parliamentary practice that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable or otherwise engage in speech that would be regarded as damaging to the good name of the person or entity. Therefore, if their statements are potentially defamatory in relation to an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative they comply with any such direction I may make. Members attending remotely are reminded of the constitutional requirements that to participate in public meetings, members must be physically present within the confines of the place Parliament has chosen to sit, namely, the Leinster House complex. In this regard, I ask any members participating via Microsoft Teams to confirm they are on the grounds of the Leinster House complex if they wish to contribute to the meeting. I remind all those in attendance to make sure their mobile phones are switched off or in silent mode.

Today's meeting concerns renewed discussions and reviews of pre-budget submissions. At the outset, I thank the witnesses for making a submission and for attending today's discussion on the submission details. We, as a committee, look forward to engaging with the witnesses on their submissions, which address key issues such as poverty and the cost of disability. With that in mind, I welcome the following witnesses to this morning's meeting: from AsIAm, Mr. Adrian Carroll, senior policy officer, and Mr. Michael O'Flanagan, head of legal, policy and information line; from Inclusion Ireland, Mr. Gáibhin McGranaghan, policy and parliamentary affairs lead; from the Disability Federation of Ireland, Ms Fleachta Phelan, policy advice manager; and from Vision Ireland, Mr. Kevin Kelly, head of policy, partnerships and external affairs, and Mr. Aaron Mullaniff, chief services officer, policy and information line.

I now invite the witnesses to make their opening remarks.

I thank the Joint Committee on Social Protection, Rural and Community Development for the opportunity to address it this morning. Representing AsIAm, Mr. O’Flanagan and I appreciate the opportunity to contribute to this important discussion of Article 28 of the United Nations Convention on the Rights of Person with Disabilities, UNCRPD, and AsIAm's recommendations for budget 2027.

AsIAm believes in an Ireland where we all have the same chance to live with dignity and be a full part of our community and where we are accepted for who we are. These values underpin AsIAm's vision for an autism-affirming society.

Our social protection system is a hugely important public service which gives expression to the kind of society we want Ireland to be. AsIAm sees budget 2027 as an important opportunity for the Government to lift disabled people out of poverty and make meaningful progress towards building an autism-affirming society, as identified under the autism innovation strategy.

In our work supporting the autistic community, we often hear from community members who want the same chance to belong, to access supports they need, to be included as their autistic selves at work, to feel safe and accepted in their community, and to have what they need to live a life of dignity and independence. We know all too well that while for many autistic people and families across Ireland these aspirations are not out of reach because they are autistic, they are nonetheless often held back because systems they rely on for support end up deepening barriers they already face. Parents tell us about the financial toll of having to pay privately for therapies out of their own pocket because the HSE cannot provide timely support, while autistic adults tell us about the impact of feeling alone and isolated within their community. They also tell us about the emotional toll of struggling to stay in workplaces they are expected to fit into, while not being accepted and supported for who they are at work. Families tell us about having to cut their work hours or to leave work to become full-time carers to support their loved ones. These costs do not just disappear; they are absorbed by autistic people and families.

AsIAm is calling on the Government to use budget 2027 to realise its commitment to building an autism-affirming society. The autism innovation strategy and the national human rights strategy for disabled people have made some welcome progress. While the Government has promised autistic people and families that things will get better, we are calling for these promises to be backed by meaningful investment that will make this a reality. Strategies will only work if they are ring-fenced year to year with anchor funding.

AsIAm has three key priorities for Government in our pre-budget submission. First, we want the Government to use budget 2027 to do more to address poverty and social exclusion. Like many of the communities represented here before this committee this morning, autistic people and families face real and significant financial hardship, and many of our community experience isolation and social exclusion. Recent research from the ESRI and the Irish Human Rights and Equality Commission shows that households with a disabled person need significantly more income to achieve the same standard of living and as much as 90% additional income for people with higher support needs. These costs are much higher than what was laid out in the Indecon cost of disability report. The recent European Commission semester report for Ireland also highlights this as a significant issue the Government needs to do more to address, referencing the CSO survey on income and living conditions statistics that shows that targeted measures addressing the cost of disability make a difference. Taking these supports away, as we saw in last year's budget, means that disabled people are much more likely to experience poverty and material deprivation. This means that families are faced with having to make arduous choices to get by before even thinking about getting ahead.

AsIAm welcomes the Government's commitment to introducing a cost of disability payment, and we want budget 2027 to be a platform to invest in addressing these disability-related costs at the source. Alongside this, we recommend increases to disability allowance, domiciliary care allowance, and carers' allowance to help address the ongoing cost-of-living pressures facing the autistic community and all the communities represented here today.

Our second priority is for the Government to increase targeted investment in autism-specific supports. The autism innovation strategy shows what the Government can achieve when it works in partnership with autistic people and families. However, many of its commitments remain outstanding, and we want the Government to build on this progress both through acting under this strategy and legislating for a future national autism strategy. For budget 2027, AsIAm calls on the Government to increase investment in our autism community support hubs, to extend our AAC programme to adults, to establish the autism innovation fund, and to invest in autism-specific employment supports which enable autistic people to access and remain in the jobs they want.

Third, the Government must use budget 2027 to deliver on the commitments made to the autistic community. The Government has already committed to implementing a national human rights strategy for disabled people, extending the autism innovation strategy, legislating for a new national autism strategy, and implementing the recommendations highlighted in the review of the Education of Persons with Special Educational Needs, EPSEN, Act. For far too long, the needs of autistic people and families in Ireland have neither been fully recognised nor adequately resourced. Budget 2027 is an opportunity to change course and to make these commitments a reality for our community. Meaningful investment in inclusive education, healthcare, independent living, mental health, employment, and community supports are not abstract choices but help to make rights real for autistic people and families throughout Ireland. Autistic people and families show extraordinary perseverance every day, at school, in the workplace, in communities across Ireland and in navigating systems which are not often designed with autistic people and families in mind. Autistic people want the same chance to go to school and learn in their community, to work and live independently, and to be a part of their community. When the Government invests in inclusion and active participation, these benefits extend beyond autistic and disabled people and their families to employers, communities and wider society at large, building connected, cohesive communities which enrich our society as a whole.

In summary, budget 2027 presents an opportunity for Government to demonstrate leadership and build trust by investing in the measures necessary to create a fairer, more inclusive and autism-affirming society for autistic people across Ireland. This includes breaking the link between disability and poverty, investing in dedicated autism-specific supports, and delivering on the strategies highlighted earlier to support more autistic people to belong, work and thrive. We look forward to engaging with the committee and answering any questions members may have.

Gabhaim buíochas leis an gCathaoirleach agus na comhaltaí as ucht an deis labhairt leo ar maidin.

Inclusion Ireland is the national organisation advocating for the rights and inclusion of people with intellectual disabilities. Ahead of budget 2027, we asked people directly what their lives were like through the Our Rights, Our Voices national survey, which heard from approximately 1,500 adults with an intellectual disability, their families, and parents of children across the country. More than 500 adults with an intellectual disability answered for themselves, the largest group yet we have directly surveyed.

Today, we appear alongside colleagues from AsIAm, the Disability Federation of Ireland and Vision Ireland. The committee will hear a shared message from all of us and from Inclusion Ireland, grounded in the words of people with intellectual disabilities themselves. Two of our findings speak most directly to this committee: that people do not have enough to live on and that they do not feel heard. Two our to three adults with an intellectual disability told us that their social welfare supports are not enough to meet their daily needs, a figure that has barely moved in two years. More than half carry disability-related costs that their payments do not cover at all. According to national data, working-age people with an intellectual disability have the lowest median income of any disability group, at €12,260.

Recurring costs of a disability run between €10,766 and more than €15,000 a year. Indeed, as one adult told us, the money they receive is not enough, given how much the cost of living is. The remedy is already committed to on paper. Budget 2027 should introduce the permanent cost of disability support payment set out in the programme for Government, and benchmark core payments, disability allowance, and carer's allowance against the minimum essential standard of living. The €10 increase in budget 2026 only kept pace with inflation. Payments must be set against real adequacy and standards and protected from year-on-year erosion. This is exactly what the national human rights strategy for disabled people commits to through its whole-of-government approach to the cost of disability and the welfare and anti-poverty commitments in pillar 2. It is also what the UN Committee on the Rights of Persons with Disabilities asked the State to guarantee in its recent report: an adequate standard of living and a permanent annual cost-of-disability payment. Meeting this standard is what Article 28 of the UNCRPD and Article 26 of the EU Charter of Fundamental Rights require of the State.

The people filling these gaps are overwhelmingly family carers who have reduced or have had to give up paid work. In our survey, removing the carers' allowance means test was one of the most frequently requested changes in families' own words. The means test, the 18.5 hour limit on work and study, and the household income threshold together form a poverty trap for the very households the State relies on to provide care it would otherwise have to fund itself. Budget 2027 should set a clear timeline to abolish the carers' allowance means test and 18.5 hour limit. This also answers the UN committee's list of issues which calls for removing disincentives in the social protection system which limit access to employment.

The European Commission's 2026 semester report for Ireland links these same disincentives to Ireland having one of the highest disability employment gaps and among the highest poverty risks for disabled people in the EU.

Housing is largely handled by other Departments but income is what makes independent living possible or impossible, so it belongs in social protection too. Three in five adults with an intellectual disability still live in the family home, according to our most recent survey, and fewer than one in five who want to move out have any plan to do so. People do not simply ask to live alone with support; they want to live near family and friends, among people they choose and in a community they know. As one mother said:

To live 'in the community' alone with rotating support staff is the loneliest housing choice I could imagine for my child. I want her to be with her friends, near her day service, in the town that she knows.

For this committee, income and planning are the practical levers. We ask that budget 2027 permanently fund and expand the personalised budgets model and ensure welfare supports are adequate, so that moving out becomes a real, empowering choice and not a financial impossibility.

I will discuss the starkest finding of all. Across all our surveys, 81% of people on average do not believe the Government listens to them in budget decisions, rising to 93% among parents of children with an intellectual disability and 83% among families of adults. These are people who are consistently telling us that decisions about their lives are being made without them. One adult asked only this: "Listen to my voice, and not those who are supporting me – we are often not saying the same thing, but my voice gets overruled." Budget 2027 is the Government's clearest annual statement of its priorities and values. Inclusion Ireland asks this committee to make income adequacy and the cost of disability central to its recommendations and to help ensure that, this time, people with intellectual disabilities and disabled people can see their own voices reflected in the result.

Gabhaim buíochas le baill an choiste as a gcuid ama. Tá áthas orm a gceisteanna a fhreagairt.

Gabhaim buíochas leis an gCathaoirleach agus leis an gcoiste as an gcuireadh labhairt leo inniu. DFI is a civil society pan-disability federation of over 100 organisations working at a national, regional and local level. Our members support over 429,000 disabled people each year. Our policy recommendations reflect member feedback, the lived experience of the disabled people they work to support and our own research and analysis.

Fundamentally, Ireland’s approach to social protection for disabled people should be based on the UN Convention on the Rights of Persons with Disabilities. In particular, it should deliver on Article 28, which outlines the right to an adequate standard of living and social protection, including the continuous improvement of living conditions, poverty reduction programmes and state assistance with the extra cost of disability. It should also deliver on Article 27, which outlines the right to work on an equal basis with others, the right to training, return to work and reasonable accommodation.

However, two in five people unable to work due to a long-standing health difficulty, including disability, lived in enforced deprivation last year unable to afford essentials like heat, new clothes, socialising with friends or family or sufficient healthy food. This group has consistent poverty rates of 13.9%, which are almost three times the national average of 4.7%. If we were to exclude the recent one-off measures, the 2025 at risk of poverty rate for those unable to work due to disability, which was 28.4%, would rise by almost 8% to 36.3%. This is deeply worrying given the choices made in last year’s budget.

The many extra costs of being disabled are significant, well-documented and continue to rise, as evidence shows. Adjusted for inflation, the Indecon-established cost of disability range is now likely to be between €11,046 and €15,617. The ESRI established last year that disabled households need between 41% to 93% extra disposable income to achieve the same standard of living as a similar household with no disabled members. When cost of disability is factored in, disabled people’s at risk of poverty rate increases to a staggering 65% to 76%, yet the basic weekly disability allowance rate is more than €100 below the poverty line. In some cases it covers less than half the additional disability-related costs.

Our social protection system is failing people with disabilities. This is unacceptable. Something is wrong with a system that expects disabled people who cannot work to eke out their lives constantly struggling to get by on a deeply inadequate income. There is very significant popular support for a social protection system that does not push people with disabilities into poverty. The ESRI showed that 91% of people agree that more should be done to support disabled people to meet their extra cost of living. However, people with disabilities were let down by last year’s social protection budget, which removed supports, resulting in net income losses of up to €1,264. As a result, there is significant ground to make up this year. While political statements prioritising disability are welcome, they must be backed up by sufficient funding and policy prioritisation in budget 2027.

DFI’s budget submission outlines key solutions to the structural barriers that lock in disability poverty, deprivation and low employment rates. Most crucially, it is beyond time to bring in the long-called for cost-of-disability payment. We are calling for a recurring, universal, non-taxable weekly cost-of-disability payment of €55 as an interim measure while the codesign process continues, working to develop a graduated payment scheme over time. In addition, budget 2027 should also provide an emergency payment of a minimum of €400 to address removal of the disability support grant last year; adjust core rates by at minimum €15; increase the disability allowance income disregard to €1,000; end household means testing - where means testing takes place only a disabled person’s income should be assessed; and address energy poverty by restoring the purchasing power of fuel allowance and increasing the uptake of the heating supplement.

Given the urgency of need on disability poverty, this input focuses on social protection but several aspects of DFI’s broader budget submission are relevant to rural and community development. Investment is needed across a range of Departments to truly deliver the right to independent living and other rights enshrined in the UNCRPD. Poverty is not inevitable. Ireland is a wealthy country with significant resources. We can and must do better by the tens of thousands of people with disabilities who rely on our social protection system to survive, including Sarah, John, Stephanie and Rachel, whose powerful testimony by email of exclusion, extreme stress, going without and being forced to make impossible financial choices we included along with our statement in the appendix. Their words are powerful and I am sure committee members have read them. By addressing our recommendations, budget 2027 can finally make permanent progress towards vindicating disabled people’s right to an adequate and improving standard of living equal to others.

I thank the Cathaoirleach and members of the committee for inviting Vision Ireland to appear before them today. I am chief services officer with Vision Ireland and am joined by my colleague Kevin Kelly, head of policy and external affairs. We are grateful for the opportunity to present Vision Ireland's priorities for budget 2027.

Vision Ireland is Ireland's national sight loss agency. For almost 100 years, we have supported people who are blind or vision-impaired to live independently, access education and employment, and participate fully in their communities. As chief services officer, I have the privilege of meeting people who are blind or vision-impaired every day. I see first hand their resilience, ambition and determination. I also see the barriers that too many continue to face, not because of their sight loss but because of the financial and societal barriers that surround it.

Today, I want to leave the committee with one simple message: no one should face poverty because they are blind or vision-impaired. Yet, for far too many people in Ireland, that remains the reality. In 2026, almost 3,000 people will come to Vision Ireland for help for the first time. Behind every referral is a person whose life has changed, often overnight, and a family suddenly adapting to a new reality.

The demand for our services continues to grow, and with it we see increasing financial hardship, social isolation and barriers to independence. One of our service users recently told us that they have to spend more money on their shopping or on their electricity. They have absolutely nothing left to play with, and they are broke by Sunday. Another said that sometimes they have to choose between eating or having some heating, and they have no social life whatsoever. These are not isolated stories. They reflect the lived experience of many of the people we support across Ireland.

People who are blind or vision impaired face some of the highest additional costs of disability, while also experiencing significant barriers to employment and financial security. According to census 2022, the employment rate for people with a severe vision impairment is just 26%. Those who are working estimate they would earn, on average, €24,000 more if they were fully sighted. At the same time, living with sight loss brings additional costs of almost €14,000 every year. These are not optional expenses. They are the costs of accessible technology, transport, healthcare and household supports that enable someone to live independently and participate equally in society. Almost every service user we surveyed who experiences these additional costs has had to reduce expenditure on essential items. Many have delayed replacing their assistive technology, reduced their heating or cut back on groceries simply to make ends meet. Transport illustrates the challenge particularly well. One service user told us that they cannot see the numbers on the bus in the village, that they have fallen on broken paths and that they have to pay for a taxi in order to go somewhere. For many people who are blind or vision impaired, transport is not simply about getting from A to B. It determines whether they can work, attend college, access healthcare or simply participate in community life. People who are blind or vision impaired are not asking for special treatment - they are asking for the opportunity to participate in society on an equal footing with everyone else.

Against that backdrop, Vision Ireland is asking the Government to take three practical and achievable steps in budget 2027. First, it should introduce a universal cost of disability payment, which we have heard about already, beginning at €55 per week. The additional costs associated with disability exist regardless of income or employment status. The payment should be universal, non-taxable, paid weekly and supported by a straightforward, once-off application process. Second, while that longer term scheme is being developed, a €400 emergency winter payment should be introduced for recipients of blind pension and disability allowance. Many households cannot afford to wait another winter for meaningful support. Third, it should increase the blind pension capital disregard from €20,000 to €50,000, bringing it into line with disability allowance. It is difficult to justify why someone receiving blind pension should be treated differently because this threshold has remained unchanged for more than two decades. These are not simply budget measures; they are measures that determine whether someone can afford to work, remain in education, heat their home, travel independently and live with dignity. At the same time, Ireland continues to be without a national vision strategy. While demand for services continues to grow, people who are blind or vision impaired are still navigating a fragmented system without a co-ordinated national framework to plan for prevention, rehabilitation and lifelong support. We respectfully ask the committee to support these recommendations and bring them to the attention of the Minister and the Department as part of the budget 2027 process.

I thank the witnesses for their presentations. I invite members to join the discussion. I remind members who are participating remotely to use the "raise hand" feature and to cancel it when they have spoken. I will offer members seven minutes for questions and answers.

I thank everyone for coming in this morning and for all the work they do for people with disabilities. I will start with Mr. McGranaghan. He stated that two out of three people with intellectual disability say their payments are not enough. At what level does he believe the new cost-of-disability support payment should be set to make a meaningful difference? Would he support additional non-financial measures such as training and supports to be provided by the Government? How do we ensure increases in welfare are not eroded by rising disability-related costs such as transport, therapies and equipment? Sinn Féin supports the calls for the abolition of the means test for carers. We know that carers save the State millions of euro annually for the work they do so willingly. If the Government refuses to abolish the means test for carers in this budget, which elements of the means test should be prioritised first: the income thresholds, the 18.5-hour rule, or another reform?

I might ask the Deputy to repeat some of the questions. I will take the first one on the appropriate level for a cost-of-disability support payment. We echo the Disability Federation of Ireland's figure of €55. For us, that would be the bare minimum that we would be prepared to work with, being mindful that this is likely to be an evolving payment and the figure itself will evolve over time. There has to be a clear process for disabled people, their families and representative organisations to meaningfully co-design and tweak that as time goes on. Internationally, there is not really a comparison for what the Government wants to achieve here. It is bold and ambitious, and a real opportunity for Ireland to show leadership. It is especially timely given that the State is taking up the European Presidency. It is time for bold actions like that to meaningfully embed co-design and to start off with the €55 a week figure.

What was the Deputy's second question?

How do we ensure increases in welfare are not eroded by rising disability-related costs such as transport, therapies and equipment?

We believe that to ensure these costs are appropriately covered by the budget, the State needs to step up its investment with regard to the human rights strategy and has to reinforce the existing payments that were removed in budget 2026. As DFI was calling for, there has to be a meaningful increase in existing payments with regard to disability allowance and carer's allowance. The Government must also build it in that when the cost-of-disability payment is being planned, this costed payment will be quite overarching and will ensure that those issues are bedded into the consultation whenever it is being developed. I believe the Deputy's third question was about the means test.

If the Government refuses to abolish the means test in the budget, which elements of the means test should be prioritised: the income threshold, the 18.5-hour rule, or another reform?

We are aware that the commitment to phase out the means test is an ongoing one. It is long term and is currently being acted. I know the State is looking to move that threshold. We do not have a particular position on what should be prioritised. In our view it should be phased out gradually over time as a whole. I am mindful that if the Government were to prioritise one, it would immediately disadvantage another group. In our view it is a very difficult choice to come down the middle on.

I agree. People with disabilities were badly let down in budget 2026. The Disability Federation of Ireland's submission highlights that disabled people who are unable to work face consistent poverty rates that are almost three times the national average. Given that this Government removed key supports leading to losses of over well over €1,000 for people with disabilities in budget 2026, what immediate emergency measures does DFI believe must be included in budget 2027 to prevent further rises in poverty this year?

From the day after the budget, we started campaigning to highlight the impact of it. We have really welcomed the fact that it has been discussed frequently in the Oireachtas ever since. In the past years, there was a huge level of reliance on one-off measures.

The ESRI and others did warn that to remove these without bringing in any permanent support to replace them was going to have a devastating impact, and this is what we saw. We warned about it in advance of the budget and then we saw it happen. We have been campaigning since day one, along with a number of other organisations, for a fairly meagre measure, which is the replacement of one of the one-off supports that was provided. This is the disability support grant, which was welcomed as a really positive acknowledgement of the extra cost of disability in the previous three budgets. It was a €400 one-off payment and this is the starting point.

I do think it is also going to be important, outside of the measures we all recommend in the budget, to keep things under review. We do not know what the winter is going to look like. We do not know how energy prices are going to escalate. It is important to remember that experts have criticised to some extent the universal nature of some of the supports that were brought in and have said it would be much more effective to have targeted supports. Disabled people will need these one-off payments, be it an electricity credit or a one-off payment. Building on Deputy Guirke's question to Mr. McGranaghan, our payments need to reflect the pricing and inflation that is there. We do not have a form of benchmarking at the moment.

Going back to means testing, we know it is causing real hardship, as illustrated in Stephanie's testimony of her disability allowance having been reduced based on her partner's income, leading to her having to forego medication and counselling. What specific immediate reforms does the DFI recommend with regard to means testing?

I was reflecting because the DFI and other organisations were before this committee's predecessor at a session in May 2024 that was specifically on means testing. I am sorry to say that all of the points we raised two years ago are still relevant. I am really glad Deputy Guirke picked up on Stephanie's story; I included the emails in detail because they tell the story of the human impact much more effectively than me outlining statistics. What is particularly striking is the fact that Stephanie is living with her partner. She is living independently. Her partner getting a promotion and an increase in his wages is something that should be a good development for the household but Stephanie is anticipating that her already reduced disability allowance will be reduced further because the system will means test. It is really important that we individualise the means testing.

I have a quick question for Mr. Carroll. He said that disability-related costs can be as high as €488 to €555 per week. Will he tell the committee what are the biggest costs facing families today that the Government continues to overlook?

In our Same Chance report this year we have shone a light on some of the additional costs that autistic people's families face. Many of us in this room are sharing similar experiences of having to pay extra costs in terms of clothing, heating and life. Ms Phelan covered in great detail the extent that energy poverty impacts autistic people and disabled people across the board.

Food and personal supports are also worth mentioning. There are supports that many of us require on foot of our disability, for example supports that meet our sensory needs. Autistic people might need to access particular clothing or sensory supports such as noise-cancelling headphones or sunglasses. For many of us it can boil down to the specificity of supports that are needed to meet people's needs on the ground. One of the things we want to call for in our submission on the cost of disability is that the payment would be designed to reflect the individualised nature of these costs.

I thank all of our witnesses. I apologise in advance because I must leave to speak in the Dáil Chamber but I will come back for the second round of questions. I would like the witnesses to answer in turn my question on the significance of the cost of disability. There has been a lot of talk about the cost of disability payment. We know that having a disability is very expensive. We also know, and I say this all of the time, that people with disabilities are not disabled by themselves or by their own capacity; they are disabled by a society that is disabling for them. Sometimes it can be quite expensive to get around this. Is there a difference, in the opinion of the witnesses, between a once-off payment paid annually and one paid weekly or monthly? Is there a preference among the witnesses? There may not be a unanimous view. In terms of how any cost of disability payment would be structured, would it be weekly or monthly or one annual payment? What do the witnesses think will work? It would be very easy to say that everybody should have what it is they need specifically but we know that whatever scheme the Government designs will be universal. Is there a preference or a view among the groups?

The preference, based on the fact that a lot of our services users are struggling to make ends meet, is absolutely that it would be weekly in nature.

We concur on it being weekly. I am speaking for our community and I am conscious this might be an issue for disabled people. With such a payment a degree of financial literacy is assumed. A lot of people would be relying on carers and supporters to avail of the payment and to process it, and having it more regularly would ensure they are likely to be more regularly involved in it and that there would be closer oversight of the individual who is meant to benefit.

We are going to completely agree with each other on a weekly payment, and this is for predictability and stability. There is also the issue that someone who is given an annual payment will have to use it for whatever the most urgent bill is. However, if it is built into their budget they can save up week by week if they need to or they can spend it.

I agree with weekly. As things currently stand people plan from week to week because of the high cost of living, inflation and the additional cost of having a disability. The disability allowance payment is €254 a week, having increased by €10 last year. We know that the rise of inflation cut this out and it did not have any real effect on people as such. It is a very fair ask that the payment, when and if introduced in the coming budget, is weekly so that disabled people and autistic people can plan their ordinary lives as everyone else can.

I wanted to check because that is how I would prefer it; it is much easier to plan and, as Ms Phelan said, the predictability is important. Will the witnesses speak to me for a moment about the amount? The amount of €55 was mentioned but Ms Phelan also mentioned the possibility of an emergency payment while a more longer-term scheme is established. We know that people with disabilities were very badly served in the last budget. We know that despite claims to the contrary the income in households of persons with disability went down. Unfortunately, we cannot have an election every year, but that seems to be when the supports get rolled out. In terms of the €55 versus the emergency payment, how do the witnesses see this? How much time do they think is reasonable to give the Government to put this longer-term plan in place? In the intervening time, what is the proposal?

The €400 payment should already have been paid months ago, probably last October or November. It is a catch up on an ongoing deficit in people's pockets that needs to be addressed. We are into budget season now but we are not giving up on this request because it remains. In terms of the payment on an ongoing basis, it is very important that we see an actual cost of disability payment in the budget as a permanent measure. It will be a starting point, and we all understand this. It is going to take time to co-design a proper payment that acknowledges the differential levels of need.

Having removed cost-of-disability supports after three years, it is essential that we see some form of cost-of-disability payment brought in. The ask for a payment of €55 per week is quite reasonable. If we look at the Indecon range, we are talking about covering somewhere between 23% and 16.9% of that cost. There is, therefore, still a balance of extra costs of between €8,000 and almost €13,000, even if someone gets €55 a week. In that context, it is a reasonable figure.

The current disability allowance rate of €254 is €100 below the poverty line. A payment that would effectively be an additional €220 a month would certainly go a long way in supporting disabled and autistic people to meet those additional costs.

I agree with what my fellow witnesses said about this. The Government has to introduce a cost-of-disability payment in budget 2027. Previous Governments and committee members have talked over many decades about the need for a cost-of-disability payment but there has been no action. There has been regression and there have been cuts, all at a time when inflation has increased rapidly over the past number of decades, placing people with disabilities at an even greater risk of poverty. The payment should be €55 as a starting point, with a €400 emergency payment made while the process for the cost of disability is ironed out. It cannot wait any longer.

I have to go because my speaking time is to come up in a moment but I will be back for the second round.

My first question is for Inclusion Ireland. How should the permanent cost-of-disability support payment be designed to ensure it reaches those with the greatest disability-related costs while remaining sustainable?

We emphasise that the best way to do that would be to actively involve disabled people and their families and supporters from the outset, keep that continuous and ensure that the structures are consistently embedded. To answer Deputy O'Reilly's point and also address what other speakers said about time, the Government has four remaining budgets left, which is not a great deal of time, and to get these structures in place, it is imperative that they need to be there from the outset beyond the current Government, while being mindful that this will be an evolving payment. There has been welcome progress in that regard so far, with the cost-of-disability summit and the Department actively involving stakeholders, representative organisations and disability disabled persons' organisations. In our view, it is about ensuring that lived experience is consistently involved in the payment's design, including its future design.

Inclusion Ireland recommended benchmarking disability allowance and carer's allowance against the minimum essential standard of living, MESL. What evidence does it have that this approach would have the greatest impact on reducing poverty among people with intellectual disabilities?

Working-age people with an intellectual disability have the lowest median income of any disabled group in the State, at €12,260, and a 29% unemployment rate. There is not a great deal of up-to-date data on the number of people with intellectual disabilities in work. The figure of 29% was from census 2022. There is not a great deal of support available to people with intellectual disabilities transitioning from school into work, so we have to assume that 2022 figure is a very conservative estimate. People with an intellectual disability often sit at the sharpest end of poverty. We are mindful that the actual national at-risk of poverty rate across the board has risen from 11.7% to 12.6%. We are also mindful of just how affected people with intellectual disabilities will be within that.

Inclusion Ireland has called for the abolition of the carer's allowance means test. What steps does it recommend the Government take to achieve this objective?

We hope the Government would commit to tangible actions and to accelerate the phasing out that is already happening. We are mindful that it is not cut and dried and that there will always be things to consider, as Deputy Guirke outlined. Our bottom line would be to ensure that this is ongoing, that it is in the programme for Government and the national disability strategy, and that it is mindful of time as well. The Government only has four budgets left, so it has to ensure that it meets that commitment.

What are AsIAm's priorities for ensuring that a cost-of-disability payment is targeted and delivers the greatest benefit to people with autism and their families?

This is related to the Deputy's question about how that payment should be designed. There is no question as to what the obligations of the State in terms of Article 4.3 of the UNCRPD are in respect of that co-designed piece being there from the start. In terms of our pre-budget submission and looking at the target group, those in receipt of disability allowance should be in receipt of the cost-of-disability payment. We did a costing on that with the Parliamentary Budget Office and it comes in just under €1 billion. I think the figure is €956 million. If we are looking at the needs of individuals, they should certainly be taken into account in terms of the payment because we all have different experiences, whether someone has an intellectual disability or is autistic and so on. Those needs vary. The universal payment should at least allow the individuals themselves to target how that money is spent to meet their needs.

What outcomes has AsIAm seen from the existing autism community - the support hubs - and how could expansion improve access to support nationwide?

The community support hubs have been a game changer in terms of the regional supports that are offered to autistic people across the country. We have two of them set up now, in community healthcare organisations, CHOs, 2 and 7, in Dublin and Galway. They have been very effective in providing direct advocacy support for autistic individuals and families. More particularly, they also provide targeted bespoke group supports for individuals. In our pre-budget submission, we are calling for the roll-out of those programmes, not just that programme but our augmentative and alternative communication, AAC, programme. The AAC programme was shown to be effective in the recent independent evaluation we did of it. The community support hubs are effective, targeted and bespoke to the autistic individual.

What practical measures could budget 2027 include to help more autistic people enter and remain in employment?

To pick up on Mr. Flanagan's point, one of the things we wanted to look at was addressing the disability employment gap. We have seen national statistics reflect that 80% to 85% of autistic people experience unemployment and under-employment, and that is consistent across the disability groups represented at the committee this morning. It is probably worth mentioning that there is a wider attitudes piece about awareness. We want this budget to focus on number of areas.

That was my next question. Which commitments does AsIAm believe should be prioritised in budget 2027 to implement the autism innovation strategy?

Over recent budgets, we have called for the requirements relating to the wage subsidy scheme to be reduced. We echo what the Disability Federation of Ireland and Inclusion Ireland have said in their pre-budget submissions. We would like to see the requirement in the scheme reduced to ten hours a week and, hopefully, by more. We worked with IBEC to develop a roadmap for autism and employment. A key part of that is that we would see increased investment around supporting autistic people into employment and finding a job.

I have one further question but I am too late. Are we having a second round?

The Deputy can contribute again in the second round.

I thank everyone for the work they do day in, day out. They do tremendous work in every organisation, and it is great to have all the witnesses in front of us.

The cost-of-disability payment is close to our hearts in the Labour Party and, more importantly, to everybody represented by the organisations here today. Mr. Mullaniff mentioned that for Vision Ireland, the additional costs were around €14,000 a year. What sort of additional costs are the other organisations looking at? We are getting different figures. To try to put together a full picture of the additional costs of disability, would the other organisations have a figure for the costs they are coming across?

Two figures are at play. The most recent statistics we have are from the Irish Human Rights and Equality Commission, IHREC, and the Economic and Social Research Institute, ESRI. Research that IHREC commissioned from the ESRI outlines the specific costs of disability. These range from around €474, and we highlighted that these costs would raise the total to as much as €20,000 a year and over. The other thing worth mentioning is that we also commissioned research a number of years ago from Dr. Áine Roddy that looked specifically at highlighting the issue of the costs of accessing therapies and supports for autistic people and families. We came to a figure showing this total was as high as €28,000 a year. There is real consistency across the board in terms of our requests and the scale of disability costs.

I will be brief and not take up other people's time. Costs can be unique to individuals, so we can throw out as many figures as we want. Each household is very different. We can take two examples, starting with therapeutic supports. If two or three children in one household are autistic, etc., and two of those children require additional therapeutic supports, we are looking at a total of €140 to €160 per session. In our Same Chance report, which we published in April 2026, individual families referred a number of times to an “autism tax” as a result of those additional payments. They said that they are paying the equivalent of a mortgage for therapeutic supports. That is just one aspect, and it can vary depending on the household and the needs of the child.

The other piece we can look at concerns carers and people giving up work. This cost depends on what their income was before they gave up their employment opportunities to support their children, etc. A number of figures are out there, and the Deputy referred to this correctly. Every household is different and unique, whether this concerns individual or wider experiences.

Yes. The other issue I want to highlight is transport and access to transport, which is a major one for those with a disability. I want to get a commentary from all the witnesses on where they see the issues with transport. It comes up daily in my office. Even on my way into Dublin this morning, I was getting calls from people who are wheelchair-bound and cannot get up and down their own hometowns because of access issues. Is this coming across the desks of the organisations represented here as much as it is coming across my desk?

For Vision Ireland and for people who are blind and vision impaired, access to transport is a key issue. All of our survey data clearly shows that one of the highest additional costs of disability comes from transport. This is the case for a variety of reasons. Someone who is blind or vision impaired cannot drive, so they are very dependent on public transport. That is fine if public transport is accessible and available to them in their locality and if they receive sufficient orientation and mobility training, but people who live in a rural area may not have access to sufficient public transport to take them to college or school or employment. There have been improvements, but one statistic I will take from our pre-budget survey is that 63% of those surveyed spend a minimum of €20 per week on a taxi to complete an essential journey. An essential journey is one to attend a medical appointment or to attend school or college, and 90% of those surveyed say their life is being limited by the additional costs of their disability.

I thank Mr. Kelly.

Transport is a key issue. We have a lot of transport requests in our overall pre-budget submission. The Deputy knows that there is a significant difference between the urban experience and the rural experience. We need to see action on this issue. It was positive that transport was acknowledged quite strongly at the cost-of-disability summit. The Department of Social Protection hears about all of the costs in a whole range of areas, and they relate to areas and public services outside the remit of the Department’s brief. When we are talking about the cost of disability, we have to acknowledge two things. We are focused on the cost-of-disability payment, which has to come from the Department of Social Protection. Other ways of reducing those costs are to address the service needs in other areas.

To make another point on the costs quickly, because I represent a federation I have to operate on averages. This is why I cite those. I will say that a number of our members have done work on their individual costs. Multiple Sclerosis Ireland has shown significant costs where someone has severe multiple sclerosis. Arthritis Ireland, the Irish Wheelchair Association and many others have also done so. Our request at the minute is a base payment of a certain rate, because this is the fairest request we can have until we get into a meaningful discussion about the individual costs that people have, which we have already acknowledged.

Over time, we need to design a system that can be needs-based and will allow people to articulate the needs they have. Some people may need less than €55, because they may not have those significant extra costs. We also know that there are people who need more. In the absence of being able to have that discussion, and given the urgency of the need, this is where we hear a universal call for a base rate now. We can then get into designing a system that addresses-----

I ask the witnesses to forgive me. I have to go to the Chamber for a speaking slot.

I thank all the witnesses for their presentations. I have been around for a while and have had a lot of dealings with the organisations represented. We are still learning every day about the issues disabled people are being confronted with.

It is rather alarming that the federation has said that those who earn income are €100 per week below the poverty line. It is very frightening and stark. All of us have an obligation in this regard. There is no point in the witnesses coming in here today and making their presentation, and in our agreeing with them, unless we do something about it. It is not a matter of walking out the door and forgetting it until the witnesses are in here next. In our respective parties, we will be making the case in advance of the budget to address the issues the witnesses have raised.

A lot of the questions have been answered already, but I want to share a conversation I had with a constituent yesterday who has two adult sons with special needs. Some of the witnesses will have been around long enough to remember the motorised transport grant, which was very effective. For some reason, it was decided that we were going to change it. It has taken a long time. That was about 15 years ago, and I am frustrated raising this time after time and asking when something is going to be done about it.

I got a whisper yesterday that something is going to be done about it, but I think that what is being proposed is not practical. The proposal is that funding may be made available to provide wheelchair access to vehicles, but not everybody is in a wheelchair. There are other people with special needs and they are not included in it. The family I spoke about has two grown adults and that proposal is of no advantage to them. They need a vehicle that will transport them from A to B, and do not require the other aspect. I think this is something all of us should focus on, because I expect something will be happening in this regard later. When it happens, it will be too late to do something. I am glad that I got a whisper yesterday that it might not be the type of grant that was there previously.

I find that a lot of people living in towns in rural Ireland are not able to use manual wheelchairs. Have the groups made a case for considering the use of motorised buggies to allow people to have a reasonable standard of life that would allow them to get out and about? These buggies are not that expensive or perhaps they could be grant aided. Most towns now have footpaths that they could use.

The carer's allowance was mentioned too. The increase in the disregard now is relatively high, but still not high enough. Hopefully, all of it will be disregarded over the next couple of years, in the context of the 18.5 hours. The €2,000 is paid to carers, and not to those receiving care.

They are not getting any advantage from that at all. At the moment, there are carers and those who require home support, who are under a different Department, namely, the Department of Health. Many are discharged from hospitals and no one is available to do this. I think they would be available if the reward were much greater than it is because it is no more than the minimum wage.

I thank the witnesses for their contributions. Those were my few questions, which they might address.

I completely agree with the Deputy on what he said about the poverty line. It is frightening. We are not even asking to bring supports and payments up to the poverty line, even though it is the bare minimum that should be provided. We would need to ask for €377. Our submissions cite the 2025 poverty line, but I checked with Social Justice Ireland yesterday. The important thing, when we consider the cost of disability, is that our measurement of poverty focuses on income alone. The committee discussed in a focus session how we measured poverty. This came up with the European Anti-Poverty Network, EAPN, last week as well. As the ESRI has shown, we are significantly underestimating the levels to poverty in disabled households because we are not factoring in the extra costs. I welcome that the Deputy will go back to his party and fight the good fight on the budget. I thank him for that.

I will pick up on Ms Phelan's point about poverty. One of the things we find in the statistics we have is that there is a remarkable consistency in what we see from year to year. The at risk of poverty, AROP, index is at 30%. Across the board, disabled people are twice as likely to experience unemployment and underemployment and we see that having a bearing on their ability to access income. One of the things Social Justice Ireland has a real focus on is in-work poverty. Almost one in five disabled people are experiencing poverty and material deprivation, even if they have a job. That is of real concern because, even in some of the personal stories we see, people's experience of working is that it is not meeting their needs on the ground.

I thank Mr. Carroll. Mr. Kelly wants to come in as well before we finish up.

I will briefly pick up on the point as well that 32.5% of disabled people are unable to work or are at risk of poverty, so we can see the poverty impacts when we compare those who are working and those who are not. There is a universal need for poverty to be addressed.

We completely agree with the Deputy on the disabled parking scheme. We have raised with the Department of Transport the need to widen the availability criteria of the disabled parking scheme from mobility impairment to include families who have autistic and neurodivergent members. It goes beyond being needed by wheelchair users. It should be a universally accessible permit.

Deputy Gallagher and I share a home county and I agree with his statements. Vision Ireland is regularly told by its service users about problems accessing public transport to attend hospital in Letterkenny. They are dependent on family members to drive them. That is a cost on the family, so any scheme that might be introduced to address the mobility challenge must be inclusive of people who are blind or vision impaired. Donegal is a vast county and if people have to travel from north Inishowen or west Donegal to Letterkenny for age-related macular degeneration, AMD, treatments, the costs and their impact on the family rapidly increase over a year. People often attend on a monthly basis and at the start of treatment perhaps more regularly.

Has any of the witnesses made a case for primary medical certificates? It is nearly impossible to get a primary medical certificate unless people have lost both of their arms and both of their legs. However, I believe many people are entitled to it. Even people who are visually impaired are at a great disadvantage. Perhaps we could have a chat some time about what we can do to assist with that.

I thank the witnesses for coming. There is universal consensus across all agencies about what needs to be done and that there is huge poverty within the communities of people with disabilities. Were all the witnesses at the cost of disability summit? Will they share their thoughts about how they felt it went?

Since the last budget, DFI has been very good at putting forward how the budget has affected people with disabilities. In its submission, it said that the last budget resulted in a net income loss of up to €1,264. Will Mr. McGranaghan go through what supports were taken away that come to that figure? I brought up the figure with the Minister after the cost of disability summit and he said that there were no cuts to permanent measures. That was his response.

I thank the Senator. Yes, we were at the cost of disability summit. I will talk about the positive aspects first. It was a good opportunity for everyone to get together. It was welcome that the Taoiseach, Tánaiste, the Ministers and the Minister of State were there and gave a good bit of time out of their day to listen to people. A wide range of issues was covered.

On the not-so-good stuff, the biggest issue a lot of our members had was that it was one day, considering other consultations the State is doing. For example, the national conversation on education is split into several sessions this year, which is arguably not enough. Something as wide-ranging and nuanced as the cost of disability cannot be covered in a single day. We hope that future sessions like it will be scheduled regularly throughout the year, even after the payment has been introduced in the next budget.

Another not-so-great thing was that attendance was limited. I know there is a logistical issue, but, as we have all said, everyone has particular costs related to their disability that are not necessarily applicable to others. For example, €55 might not be enough for one person but might be enough for another. The fundamental point is that, ideally, we would have more than one person from each organisation. That is especially important if people who have additional support needs and would be most impacted are at the centre of it. Those are our two main pieces of feedback about the event.

On the budget, I can send the Senator the table in which we delineate all the different cuts. It is up to that amount, depending on the payment and people's specific circumstances. Not everyone on disability allowance lost that amount, but if you add up the disability support grant, the electricity credits, the one-off payments for fuel allowance and the one-off payments for living alone allowance, that is where the €1,264 comes from. The Minister is correct in saying that there were no cuts to permanent measures, but that is exactly the point. The State relied on one-off measures in the past few years to bridge cost-of-living gaps instead of addressing fundamental adequacy issues in the payments.

On the civil society-----

Would Ms Phelan agree that one-off payments are not a great idea either and that it has to be more consistent?

Absolutely. Many of us in civil society said from the beginning that the cost of disability is not a cost-of-living issue. It is exacerbated by the cost of living but it is an ongoing, permanent issue so there need to be permanent measures. The mistake was to establish the expectation, particularly with the disability support grant being provided for three years, and then take it away with nothing to replace it. That is the error we hope will be corrected in this year's budget. We are hearing about an emphasis on permanent measures, which would be really welcome.

Regarding the cost-of-disability summit, Mr. McGranaghan put it very well. There were a number of positives, such as the senior-level political engagement, where I counted five or six Ministers present, the serious policy-level discussion, which we did not have after the publication of the Indecon report, and giving it one day, although I agree one day is nowhere near enough. I had some concerns. The Department of Social Protection normally evaluates its pre-budget forum every year so participants get the opportunity to give feedback. There has not been any opportunity for participants to give feedback. The focused discussion at tables was quite controversial. A number of tables did not like the way the questions were phrased because they posited a binary choice between some supports for everybody or targeted supports for people with higher needs, and we have consistently argued that we need both of those.

The Minister for Social Protection said he thought it would be useful to have this summit every year. I do not know what the officials thought of that but it need not necessarily be the Department of Social Protection every year. It would be really welcome to build in a cost-of-disability summit every year. It could be the Department of Health or the Department of Transport with the Department of Social Protection and others there.

There is good work to build on. The key question is how the co-design process continues from now. How do the people who participated and those who did not have the opportunity to participate get involved in the designing of this payment?

I thank Ms Phelan. If she is sending additional information, she might say so to the clerk, so it can be circulated to all members of the committee. Would Mr. Mullaniff or Mr. Kelly like to comment on that previous point?

I agree with what Ms Phelan and Mr. McGranaghan said. Vision Ireland was represented, although I was not there personally. One day is not sufficient. It was great to see senior Government involvement. The event was held in Dublin. As we have already spoken about at the committee, transport is a challenge. For meaningful engagement with the wider disability community, multiple sessions need to be spread out to the regions to make sure it is a reflective voice of people with disabilities because the reality of living with a disability in an urban area is very different from living in a rural area.

The participation day was just one day. I know the report as to the conversations there is due out fairly soon in July. It was welcome to have and it is good to build on it and work toward that cross-departmental piece in terms of the cost of disability. Other key stakeholders were involved in that day as well, not just those in social protection but housing and transport. As a disability participation organisation, one piece of feedback was that there should have been more people invited physically to the day itself because the online participants were precluded from engaging in the workshops or those more intimate conversations that were happening.

Can I come back in?

You are out of time. You can come back in for round two.

I thank all the witnesses for coming in and for all of their advocacy. There has been such a change in conversation over the last 12 months that the organisations present have led around awareness of the cost of disability, what the cost of disability should be and putting pressure on the Minister and Government to deliver on that. I am really hopeful the budget does make real headway on that. I have fingers crossed for everybody around this table.

My first Dáil motion in January as a new TD was on the emergency winter payment for people with disabilities. We did a lot of work by speaking to disabled people in their home or those who were disabled themselves in trying to understand some of these financial dynamics that people are experiencing. The thing that has come up again and again is the question of the disability allowance being insufficient. As shocking as it is to say that it is €100 below the poverty line, when we go through the logic of all that it makes total sense. The cost of living with a disability is higher for a disabled person than it is for someone who does not have a disability. The opportunities to access income are lower and we have a real problem in this State supporting people with disabilities regardless of a cost-of-living crisis, which exacerbates the whole thing.

Ms Phelan talked about the co-design process and wanting to see that from the Department. It would be really interesting to hear what that co-design process would ideally look like into the future. I know there is a big question around how we would implement personalised budgets for people who have specific disabilities and specific needs. It is not even necessarily the question of what disability you have or how severe it is, it is also whether you are in a rural area or have family support and loads of different variables. I would like to hear from the witnesses on that.

One of the asks is to change the income disregard and perhaps even equalise it with what is happening with the carer's allowance, for example. I would love to hear a little bit from the witnesses on that. What would be the real-world effects of that for disabled people on the ground and what would mean for them?

I actually have four questions. I will ask those two and maybe come back around.

I thank Deputy Hayes. I will take the first question on the cost-of-disability payment and the structures associated with it. I will be very interested to hear what the other speakers have to say on this, but there are monitoring structures already on or with the national human rights strategy for disabled people. They have co-design built into them and there are places for DPOs and disabled people to be on that. We are on one of the monitoring structures There is also a disabled people's assembly and annual forum. Something like that could be embedded into this cost-of-disability payment. It might not be necessary to copy and paste those structures but there are frameworks there. The Department of Social Protection would not necessarily be starting from scratch.

As Ms Phelan said earlier about the cost-of-disability summit, having that with different Government Departments might be a idea. It could be co-ordinated from the Taoiseach's disability unit. That could be the overarching one that keeps it roving around the different Departments just to ensure multiple perspectives are considered as part of that. Fundamentally, there would have to be very clear processes for disabled people to feed back on the proposals and see that their voices are being reflected, especially being mindful of those with significant access needs because at the end of the day they are the people who will be most impacted by the payment.

The campaign is not just DFI. There is a whole alliance including the Irish Wheelchair Association, Access For All Ireland and many other organisations.

On the co-design process, that is what is really important. It is good to start it but it is going to take time and is complicated. We all acknowledge it is complicated and not a simple thing. We hope it can be a simple thing to open the account, start to provide some kind of cost-of-disability support and to get it right according to people's needs. A lot of us put a lot of detail into the submissions we made, including questions of assessment, administration, etc. It is going to take time. AsIAm may have interesting reflections from its work on the national human rights strategy, which was co-designed with DPOs. We need to see action now but we need a commitment. We are probably going to have to sit down and talk about a whole set of different things. The summit was positive but we got maybe an hour's discussion at tables. There is a lot to get into and that will take time but people are ready for it.

It is really important to see change on the income disregard this year. It has not changed in three years and has been eroded by inflation. We have seen really positive progress on the income disregard for carers. That is showing how far behind the income disregard piece is for disabled people.

On the income disregard, we also look at carers. The Deputy was asking about the practical steps and so on. My family has benefited from the income disregard. It has a practical and real effect for families and removes a worry and stress they would have previously had in terms of income, budgeting and the planning around it.

That is just an isolated piece. In terms of the families we support, last year's reduction in that was welcome but, in fact, it should not exist. Looking at carer's allowance, for example, or even disability allowance, that is someone's individual income that allows them to live a particular way. We have spoken about how disability allowance is not where it needs to be in terms of the €254.

Regarding the national human rights disability strategy structures and the five pillars, Mr. Carroll and I sit on two of those pillars. I sit on the independent living and active participation one and Mr. Carroll sits on the employment one. Not meaning to elevate any of the concerns that have arisen to date with those particular structures, but one is around meaningful consultation and not seeking feedback. The structures can sometimes be put in place and only then, when the main bones of those structures are there, are we asked to give thoughts or opinions on them. If we are looking at the cost-of-disability payment, the design of that and so on, DPOs and disability civil society organisations need to be there ab initio building that collectively with the agencies of the State that have the resources to bring that to light in a particular way. That goes back to the UNCRPD and is not tokenistic. Article 4.3 speaks about meaningful participation and engagement with DPOs in groupings. This payment, to be well structured, needs those groupings there from the very start.

Mr. Kelly might like to comment on the blind pension capital disregard.

I agree with the comments of my fellow witnesses about the income disregard for disability allowance. As Vision Ireland said, 904 people are in receipt of the blind pension, which is at the same weekly rate. However, the income disregard for that payment is only €20,000. It has not been updated or lifted since 2004. The threshold for disability allowance was updated in 2007 to €50,000, so there is a €30,000 discrepancy there, which Vision Ireland believes is universally unfair. It something that the Government needs to address. There is no justification for a difference in the capital or means disregard.

On my own behalf, I have a few questions. I will start with AsIAm. Its autism community support hubs were mentioned. How many does it have around the country?

There are two community support hubs now based in community healthcare organisation, CHO, 2 and CHO 7. That is the old term, so-----

Which-----

Galway, Mayo and Roscommon, and then in Dublin it is CHO 7, which covers south Dublin, Kildare and east Wicklow. The two of those and-----

To where is it planned to extend that?

The hope is that we would receive funding to extend it and so on.

Where?

Obviously, there is a demand across the country for autism-specific services, so-----

Does AsIAm have any specific locations in mind?

Not at this point because we do not have any funding to roll it out, but I can guarantee that no matter where we would roll it out, it would be well received and well needed within the different communities.

The hubs that are operating are operating very well at the moment.

They are, yes. We had a very successful day yesterday. We had over 50 autistic adults who were being supported in residential and respite services avail of a summer day yesterday. I was speaking to my colleague about this just afterwards, and it was a very well-received day. That is providing practical supports for those individuals throughout the day. That is just one example. The community support hubs provide two particular supports. One is the advocacy that is well needed for families or individuals who are trying to access support and services, whether that is disability services or social protection. We know that many of the applications that go into social protection for disability allowance or domiciliary care allowance, DCA, are rejected in the first instance. I think it is over 60%, so there are problems within that system, which is another conversation. They are the kinds of supports that would be offered through the advocacy support groups and so on. Many families, through our autism information line when they come to us, do not know where to go to navigate the system because it is so complex, whether they are engaging with the disability services or social protection or accessing supports for their autistic adult.

The community supports hubs are well received and we hope to have those rolled out with increased funding.

This committee has had a lot of discussion in recent weeks about trying to promote employment of people with disabilities, and AsIAm has probably been looking in at the committee meetings and the different witnesses, including departmental officials, we have had in. Mr. Carroll might go into more detail in terms of AsIAm's request for autism-specific employment supports, what types of support it is talking about there just to remain in the workforce, and how we can adapt maybe existing schemes to accommodate same.

Similar to the point we made about the disabled parking and passengers scheme, some of the things that autistic people might experience difficulties with - this is a point that my colleague Mr. O'Flanagan made in terms of the disability payments - would be around navigating the eligibility criteria. We have an employment and post-18s transitions department. That focuses on supporting autistic adults and young people into work. We do that not only by supporting people through career clinics but also by working with employers. That could occur through the autism-friendly towns, but we also work through a number of employers. We know that there is a real demand for autistic people to be in employment in the first instance but also to be in the jobs they want to be in and in roles that meet their access and support needs. One of the things we say in the Same Chance report is that the community members highlighted in detail what they want to see as well. To speak to that, we have been working in recent years to put together a roadmap for autism employment. One of the things we have called for in respect of that is making the social protection system more accessible to autistic people who are looking for work or who are in work. You can only access the work and access scheme through people who are either in employment or they might have to access that through their employer. We have called, through our pre-budget submission, for the supports to be able to follow the person and for autistic and disabled people to be able to apply for the supports in the first instance to go through-----

I thank Mr. Carroll. If he has any specific points, just send those to the clerk afterwards. We might be able to follow through on that.

Sorry. The final point-----

I am out of time. I have only a couple of minutes myself, and if I take extra time, the members will want extra time as well, so, as Chairman, I had better be strict.

I have just one question for Ms Phelan. We have spoken about the disability payment, the €55 a week, and about the disregard. I asked a parliamentary question about the uptake of the heating supplement. The numbers are very low. As the Disability Federation of Ireland, and as a committee, what can we do to promote that? If there is really a need out there for people to have their houses heated, why are we not getting the numbers in terms of applications?

I thank the Cathaoirleach for asking that question. I am delighted that he picked up on that because I have been tracking the parliamentary questions myself. There are 690-something people receiving the heating supplement but I have just established recently that only 298 of those are on disability-related payments. I cannot believe that there are fewer than 300 people in the whole State, given the numbers we have. Also, we have about 8,000 people on the ESB critical services register. Those are people who have identified that they are medically vulnerable and are using machines to breathe or whatever it may be. So, it is very underutilised and there needs to be a promotion campaign to give people a lot more information about it.

Has DFI provided anything to the Department in terms of a plan or a campaign?

No. We would be happy to work on a campaign but it would need to come from the Department, would it not?

If there were a proposal from DFI, that would be great because, as a Member who asked a parliamentary question, I thought the numbers were extremely low. I represent a large county, County Cork, and I was shocked that the numbers were so low. I think one person in the whole of County Leitrim was in receipt of the heat supplement. It is very low.

I have just one comment about Inclusion Ireland's submission. There is a quotation from a mother:

To live 'in the community' alone with rotating support staff is the loneliest housing choice I could imagine for my child. I want her to be with her friends, near her day service, in the town that she knows.

As a representative locally for 15 years before I landed in this House nearly two years ago, I think it is one of our biggest challenges. As a society, we are not working together - the different Departments, the HSE, local authorities and disability organisations – to achieve what is so possible in the current services that are there to have an opportunity for that one person to live in her own community among her own friends and have her own life. Providing that service is something we really have to work on as a government and as a committee. That is not a question. I just want to thank Inclusion Ireland for that quotation. There is a motion in the Dáil this morning on a place called home and finding homes for adults with disabilities. It is a hugely important issue. It is being raised all the time in the Dáil. This is an opportunity for us as a committee to say we need something done on this. There is a separate committee for people with disabilities but from a social protection point of view, this is something that constantly comes to the fore.

Mr. Kelly made a good point on blind pension capital disregards from €20,000 to €50,000. That is a striking thing for members to take away today. The disability allowance capital disregard was increased in 2007 and the blind pension was not. I thank him for his comments on that.

I am out of time and will allow other members in now. Senator Martin Conway has seven minutes for questions and answers.

I thank the Chair for allowing me to come in. I commend the committee on this very useful engagement. I was following it in my office. It is extremely useful and I hope it can come to something in the upcoming budget.

I have questions for Vision Ireland on the employment of persons with a disability. The lack of a vision strategy for the elimination of preventable sight loss and preventable blindness is a problem. That is something we need to see. I know the HSE is working on this but it has been doing so for a long time. I appreciate it is a health issue but I commend it. Vision Ireland had it in its opening comments.

What I want to focus on is the significant number of people who are blind and visually impaired who are unemployed and drawing State supports. It could be over 80%. Compared with other disabilities it is much more significant. Does Vision Ireland see any light at the end of the tunnel in improving those statistics? Does it think the equipment grant available to businesses and employers who employ people with vision impairments is up to standard or fit for purpose? What could be done in terms of steps to support businesses and industry in the private sector to employ people who are blind or visually impaired? There are quotas and so on in the public sector and, to be fair, the figures are not too bad but in the private sector a huge amount more could be done.

I thank the Senator for that challenging question. I will speak on employment first and then strategy. The committee was provided with a figure of a 26% employment rate. The previous census in 2011 found that figure was 16% so we have had a marked improvement. From a Vision Ireland perspective, we have very much stepped into this space by nature of the skill sets we have within our organisation. We understand the business extremely well. We have dedicated employment, training and academia teams. Those teams are focusing on all the jobs that need to be performed. If someone is about to lose their job because of a recent diagnosis, we step in with the job retention team. If someone has regained the confidence to go back into the workforce - people do not come to Vision Ireland for a service but to regain their confidence - we have a dedicated team to do that. We also have a dedicated team that focuses on training and retraining. The organisation has been hugely successful over the last decade at getting more people back into work and keeping those individuals in employment. Much of that is tied back into having eye clinic liaison offers at the point of diagnosis so we are there when those changing circumstances happen.

The Senator is right about the absence of a blueprint. Budget measures are really important but they should always sit within a co-ordinated national framework. As background, the Irish Government first pledged its support to a national vision framework in line with the World Health Organization back in 2003. That is 23 years ago. Despite that commitment, the objective of eliminating avoidable blindness, and 60% to 70% of all blindness is entirely preventable through early detection and treatment, we are seeing something quite different on the other side. While there have been improvements and successive governments have put initiatives in place, we still remain without a single national framework for the prevention, treatment, consideration of rehabilitation and the lifelong support there.

Mr. Mullaniff will be glad to know I am well-advanced in preparing a Private Members’ Bill to make it a statutory requirement for the HSE to have a vision and hearing strategy to be renewed every five years. I hope it will be the law of the land if it does get through.

I wish to raise an area Mr. Mullaniff mentioned in his opening statement and comments. For people who are diagnosed with sight loss it can be devastating. Is Vision Ireland seeing any improvements in the referrals to its service of people who have experienced recent sight loss? Are there specific measures in place to help them hold their jobs and engage with peer counselling and so on? My experience is if people are diagnosed with sight loss, the quicker they engage with step-down services the more likely they are to live an independent normal life and to continue, where possible, in their roles. Obviously, if a taxi driver loses their sight that is a problem but there are many areas where, with the right engagements and supports, they can continue working. What is Mr. Mullaniff’s recent experience in that area?

We have a key performance indicator that we have been tracking in Vision Ireland. It looks at the length of time it takes from the point of diagnosis to get into rehabilitation services, for example, for a child with a family in Temple Street or Crumlin or an adult attending the eye and ear hospital, the Mater, Cork or Waterford. That time is typically three and a half years. I mentioned the eye clinic liaison officer service. Since we repositioned where our staff play by embedding them alongside clinical teams, we have brought that wait time down from three and a half years to about five days. What we see then is a dividend paying off by people staying in their jobs, people being provided with wraparound services and, to the Senator’s point, emotional support and counselling. They are being engaged much earlier on the journey so we see much better outcomes in the long term for those patients.

I apologise again for having to leave. It was to speak on the issue to the Cathaoirleach raised himself on housing supports for persons with intellectual disabilities specifically. If the Government does not deal with it, it is an issue that just gets more expensive and the outcomes for people get worse. Every parent fears that the package will go out to tender because that is just a leap into the unknown.

My questions are related to the payment and its mechanics, if the witnesses do not mind. Their submissions referred to the €55 a week and the inadequacy of the disability allowance. On the tiered payment, a fear I had when I started to look at this is the manner of the application process. It is not that it is not worth it, but people have to apply and reapply.

Is there a case to be made for a weekly universal non-taxable cost-of-disability payment, as Mr. Mullaniff talked about? In terms of the universality - I do not mean to be cruel - on the one hand in order to get more the person has to prove more. The universal payment has the value of not having to go through that awful process. On the other side I can fully appreciate from an accounting perspective that with the universal payment there are varying degrees of need. When we are talking about moving forward with a more permanent cost-of-disability payment, do the witnesses see it as being a tiered payment? Do they envisage that as a person moves through their life, perhaps acquiring a disability as they get older as a consequence - or not - of the ageing process, he or she would be able to move into a different bracket? In what way do the witnesses see that panning out? I know it is not a matter for this budget necessarily, but I ask in terms of the overall framework from where we are to where we need to get to. How do the witnesses see that stepping in?

With regard to universality, we would prefer to take that position to start off with. We are aware that over time this will need to be tweaked and will need to be altered depending on people's needs. We are mindful of international examples. The personal independence payment comes to mind as something we very much should not be doing because it can inadvertently discriminate. In terms of the mechanics of how to apply for it - I am conscious that I might not necessarily be answering the Deputy's question - it is about ensuring from the outset that accessibility is built into it and that it is available online and in person. We are mindful that many people in our community are not digitally active. While moves to ensure accessibility online are great, they need to be done in person as well at local Intreo offices and local social welfare offices. That would be the most we would have to say on that.

We have argued in our submission that there should be the simplest possible version of bureaucracy for people. We know that disabled people have to fill in multiple forms across multiple arms of the State, for example for housing, the medical card or whatever it may be. There should be the simplest version, with least bureaucracy, for everybody. It should be based on needs. Due to the urgency, it has to be a flat universal payment but it needs to respond to people's needs as well. Let us use the comparison of children's benefit and the child support payment. We have the universal support for parents because we understand that there are costs associated with having a child and then we have specific targeted supports as well. We can evolve a system that addresses this. To what extent we are talking about different steps? Maybe people will be writing in to establish what their costs are, and the system would support them with that. This is going to take time. That is why we need some form of a universal payment for now.

I will pick up on that. My colleague might have a few points as well. One of the things we learned from the process of working through the Green Paper consultation was that disabled people and the community felt there were significant issues with the consultation process itself. It kind of put people into a position where they felt they had to justify or prove that they were worthy of asking for the supports they needed in the first instance. As Ms Phelan and Mr. McGranaghan mentioned, one of the things we focused on in our own consultations on the cost-of-disability payments was specifically around the eligibility criteria. The European Disability Forum has a really good report that specifically focuses on how to design a social protection system payment that is fair and accessible for disabled people. The forum looked at different social protection systems. We would see a very medicalised approach to assessing disability as well. To echo what Ms Phelan has said, we must look at moving towards a needs-based model. We do not want a situation where people have to justify or prove they need the supports in the first instance. On the one hand it needs to be precise but on the other hand it needs to give a sense of accessibility and be a flexible system so people can feel they have the supports.

I have one further question which I will ask after I ask my three questions for Vision Ireland. How should the Government design a universal cost-of-disability payment to ensure it complements existing disability support for people with a vision impairment? What budget 2027 measure would have the greatest impact in helping more people with severe vision impairment to access sustainable employment? What are the key priorities that should be included in a national vision strategy for people who are blind or visually impaired?

I will take the first two questions and I will defer to Mr. Mullaniff on the vision strategy question. The cost-of-disability payment of €55 a week is our number one priority. What was the Deputy's other question?

What budget 2027 measures would have the greatest impact in helping more people with severe vision impairment?

The cost-of-disability payment. There should be no removal of other social welfare supports that are currently available to people who are blind or vision impaired. We are advocating for an increase to the tax credit that is available to people who are blind and vision impaired. That has only increased once in the last 15 years, so we are calling for a €200 increase to that. Of course, we would welcome weekly increases to social welfare payments and the €400 emergency payment.

For reference, there are other countries across the world, such as Canada, that have national vision strategies. Scotland has a national sensory strategy. The World Health Organization is recommending that we should have one. A national vision strategy would very much improve co-ordination, not only across government but also across the HSE up to and including the sectoral partners we are working with within the sector to deliver improved outcomes for people who are blind and vision impaired. A key focus would absolutely have to be on prevention.

Can I ask the Disability Federation of Ireland what evidence supports a universal cost-of-disability payment rather than a targeted scheme focused, let us say, on those with the highest disability-related costs?

We are not arguing for a universal scheme only. Such a scheme is needed until we can develop the co-design process and have the complex discussion that Deputy O'Reilly has brought up in terms of rates. A €55 payment is not going to cut it for a lot of people. As Deputy Aird has indicated, there is a set of people who have much higher costs, such as people with severe MS. We must also acknowledge that if we can address the costs on the services and support side, the gap the payment needs to address can be reduced. There is an important piece around that.

The Disability Federation of Ireland has argued that the disability allowance is holding €100 below the poverty line. What level of increased core payments would the federation consider sufficient to achieve an adequate standard of living and how should that be measured?

We have followed the minimum essential standard of living, MESL, recommendation, which is €15 and involves moving in the direction of adequacy. I would not consider that sufficient to deliver an adequate standard of living. The piece in the UNCRPD that talks about a continuous improvement in the standard of living is really important. Everybody wants to improve their living standards. We would need to be getting above the poverty line and addressing the cost of disability to really deliver.

How would removing the household means testing operate in practice? What safeguards would be needed to ensure resources are targeted effectively?

In practice, there is an argument for individualisation in a range of contexts, including for women. This comes up in the context of the gendered impact of the household means test. If we look at the case studies in emails that we provided, at least two of them would be positively impacted by removing the household means test.

In terms of any issues, certainly if we look at the medical reviews for the disability allowance, a very low number of people are overturned. It is between 1% and 3%, where medical reviews take place. I am not convinced there is a significant amount of abuse in the system. In terms of the transformative impact, if we look at the testimonies, one person talks about being a burden on their household. Somebody else says they are locked in their house. If we could address some of that, it would be a really positive outcome.

What outcome should the Government expect from the increase in disability spending on budget 2027 in terms of employment, independence and reducing poverty?

If we do take the step of bringing in a cost of disability payment, we hope to see reduced poverty rates. I am concerned because the one-off payment kind of muddied the waters a little bit about poverty rates. We have not talked about unemployment as much as we could, but there is huge progress to be made. It does seem to be a focus of the EU Presidency at the moment as well. It would be a help if we were to start seeing a reduced number of people on disability allowance or just more people availing of the income disregard, because it is quite a low number of people in paid income.

I will just ask a final question. What long-term reforms rather than temporary payments does Ms Phelan believe would deliver the greatest improvements in the lives of people with disabilities over the next five years?

I would say two. One is actually developing a cost of disability payment that is needs based. That will take time, but if we can deliver that, we could be a leader as well at a European level. The second is the means-testing reform the Deputy asked about. If we were to address that, it would be transformative.

It would be a huge plus. My last question is to AsIAm on how the Government can ensure that people with autism and their families have a meaningful voice in shaping future policy and budget decisions.

On the first point, I totally echo what Ms Phelan and Mr. McGranaghan have said on the earlier points. One of the things we would emphasise as well is that, in our role as a DPO, we would like autistic people's voices to be at the heart of decision-making. A lot of the things we are concerned about are the role of misinformation and disinformation in impacting on how autistic people perceive themselves but also whether they feel confident to access the support they need in the first instance. I refer to the idea of autism being overdiagnosed, for instance, or some of the language and rhetoric we are seeing in recent months as well. We have seen a chilling effect on people accessing the supports in the first place.

I thank the witnesses.

In my last round I tried to get to ask Mr. Kelly a question. I felt that one of the most glaringly obvious injustices that was brought before us was the capital disregard for blind persons. As a committee we need to have it as a priority to reform that. It should be an easy enough reform to make. It should not be happening and it needs to be brought in line with the disability allowance. People in my constituency have brought this to my attention. It is incumbent on this committee to deal with that as soon as possible.

I thank Senator O'Reilly for her support. I agree wholeheartedly. This is something on which Vision Ireland has campaigned regularly, so we would be very supportive of every committee member raising this with the Department. It is exceptionally unjust. It is time it was addressed. It has not been addressed since 2004.

I thank Mr. Kelly very much. I have one more question on my own behalf. In terms of the €55 a week cost of disability payment, is it the opinion of all the witnesses who are here today that it is a universal payment at the moment for everybody on the disability allowance? Is that correct? They are all in agreement on that. That is fine.

I thank the witnesses very much for their attendance – Mr. O'Flanagan, Mr. Carroll, Ms Phelan, Mr. McGranaghan, Mr. Mullaniff and Mr. Kelly. I thank them so much for coming to our meeting today and for providing the briefing material to the committee in advance for our deliberations. We really appreciate it. It is part of the committee's work that we invite in people who have made pre-budget submissions to discuss them. I am sure the transcript of today's meeting will be available for everybody, including the Minister and the Department for their consideration as we prepare for budget 2027.