Apologies have been received from Senator Nikki Bradley.

The purpose of today's meeting is to discuss counting the cost of disability and financial independence. On behalf of the committee, I extend a warm welcome to the following witnesses: from AsIAm, Mr. Michael O'Flanagan, head of legal, policy and information line, and Mr. Adrian Carroll, senior policy officer; from the Rehab Group, Ms Emer Costello, head of advocacy and campaigns, and Ms Áine Dunne; and from the Irish Wheelchair Association, Ms Joan Carthy, national advocacy manager, and Mr. Conor Lynott, member.

I will read a note on privilege and housekeeping matters. All witnesses 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 her, him or it identifiable, or otherwise engage in speech that might be considered damaging to the good name of that person or entity. Therefore, if their statements are potentially defamatory in relation to an identifiable person or entity, they will directed to discontinue their remarks. It is imperative that they comply with any such direction I may make. The evidence of witnesses who are physically present or who give evidence from within the parliamentary precincts is protected, pursuant to both the Constitution and statute, by absolute privilege.

I remind members of the constitutional requirement that in order to participate in public meetings, they must be physically present within the confines of the Leinster House complex. Members attending remotely must do so from within the precincts of the Leinster House complex.

I call Mr. O'Flanagan to make his opening statement. He has five minutes.

Mr. Carroll is delivering the opening statement.

That is perfect. I call Mr. Carroll.

I thank the committee for the opportunity to address it. I am a senior policy officer with AsIAm. I am here this morning representing AsIAm, alongside our head of legal, policy and information line, Mr. Michael O’Flanagan. We greatly appreciate the opportunity to contribute to this important discussion on the cost of disability and financial independence under Article 28 of the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. AsIAm welcomes the committee's focus on linking the cost of disability to financial independence. For many autistic people and families, their ability to participate in many areas of Irish life is affected by not being able to meet the cost of living, which is exacerbated by the barriers that persist across education, healthcare, employment, and in both disability and across our wider public services. Article 28 of the UNCRPD sets out that disabled people have a right to access social protection and an adequate standard of living. In many cases, this standard of living is out of reach for many autistic people and families in Ireland today.

The evidence clearly shows that the Government needs to do more to address these additional costs. Research commissioned by the Department of Social Protection found that disabled people face average additional costs of approximately €11,700 per year. More recent research from the ESRI and the Irish Human Rights and Equality Commission suggests that households containing a disabled person may require between 52% and 59% more income simply to achieve the same standard of living as other households. For households supporting a person with higher support needs, this figure rises to over 90%. These are costs that help autistic people and families make ends meet. The European Commission’s semester report for Ireland highlights that disability-related costs absorb more than half of the income of households with persons with disabilities. Furthermore, in the 2025 report for Ireland, the Commission highlighted that Ireland has one of the highest disability employment gaps in the EU. These include therapies that families must access privately due to the vast waiting lists for public services. These also include assistive technology like augmentative and alternative communication, AAC, devices, sensory supports, higher transport costs, clothing, specific foods, higher energy bills, communication supports and costs that come with accessing education and employment.

AsIAm’s Same Chance Report 2026 surveyed over 1,600 autistic people and families. Our community noted in this report that there are additional costs on the grounds of being autistic or raising an autistic family member. In this year's report, we found that 98% believe that a cost of disability payment should be introduced. The recent summit organised by the Department of Social Protection under the national human rights strategy for disabled people acknowledged these additional costs. Many community members who contributed to this year’s report say that they are experiencing an autism tax. Many families tell us that they are paying the equivalent of a second mortgage to access private therapies and services. Others stated they were spending hundreds of euro every week to access opportunities that meet their child’s sensory needs, from clubs to social pursuits. Autistic adults tell us of the barriers they face with accessing healthcare and mental health support and navigating being autistic at work. This reflects that autistic people continue to face significant barriers to entering and staying in the workforce.

In this year's same chance report, only 45% of respondents to our survey reported being in paid employment. Research suggests that up to 85% of autistic adults are unemployed or underemployed. Families frequently have to reduce their working hours or leave their jobs to support their autistic loved ones. This creates a cycle where autistic people and families both must pay more to meet everyday expenses, but have fewer opportunities to secure an income that ensures that they can get by before they even get ahead. In short, autistic people are significantly more likely to experience poverty, material deprivation and social exclusion.

We welcome the Government’s commitment to introduce a cost of disability payment set out in the roadmap for social inclusion, as it has the potential to be transformative for many autistic people and families. Autistic people and families should not be expected to make up for shortfalls within our health system by paying for private therapies, assessments and supports out of their own pocket. A cost of disability payment needs to be complemented by greater investment in healthcare, education, housing, transport and employment support.

In our submission to the Department of Social Protection, AsIAm sets out that three principles should guide the direction of a future cost-of-disability payment. It should recognise the additional costs that come with being autistic or raising an autistic person, and autistic people should be able to access this payment regardless of whether they are working. The payment should have a straightforward, accessible application process, without placing significant additional burdens on applicants to prove that they need this support and it should not penalise people for their individual circumstances. It should be part of a wider whole-of-government strategy to reduce the overall cost of disability and address the barriers that create these costs in the first place.

In summary, AsIAm sees the Government's commitment to introduce a cost-of-disability payment as an opportunity for us to take leadership and to help to make rights real for the communities represented here today and for autistic and disabled people across Ireland. A cost-of-disability payment would support more of us to get the jobs we want, live independently and be part of our local community. It would also tackle the loneliness and isolation that members of our community experience and strengthen and support local communities across Ireland when this support is most needed. We look forward to engaging with the committee and answering any questions members may have. Go raibh míle maith agaibh.

I thank the committee for the opportunity to speak at this very important meeting.

Rehab Group is an independent voluntary organisation that supports over 12,800 people who use our services. Our mission is to empower people to live independently, participate fully in their communities and live the life of their choosing. Disabled people are marginalised by a host of financial, physical, and societal constraints that reinforce our unequal society. Ireland has significant progress to make in fully realising the rights of disabled people, as enshrined in the UNCRPD. Independent living is out of the reach of so many people with a disability who cannot find accessible or affordable housing or who do not have adequate personal assistance support. Employment of people with disabilities in Ireland is still among the lowest in Europe. Disabled people, especially those in rural areas, struggle to find truly accessible transport options. Hidden healthcare costs for those with a medical card eat into limited budgets.

The ESRI estimates that the cost of disability is between €488 and €555 per week. Key additional costs include higher energy bills, transport, communications, equipment, disability aids, assistive technology, medical care and personal care. This list is not exhaustive in any way. Our adult service users report to us as being unable to survive independently and having to rely on family support and food banks or go without necessities such as adequate heating and food. For many, budget 2026 was devastating, leaving them more than €1,200 worse off per year.

The role of the Department of Social Protection is understandably pivotal in ensuring that people with disabilities are lifted out of poverty and can achieve financial independence. The introduction of a cost-of-disability payment is long overdue. The Indecon report was published in 2021 and has still not been actioned but we welcome the commitment to do so in budget 2026. We believe that a rights-based approach is needed to shift the mindset from, "Do you qualify?" to "What do you need to live equally?"

Our recent pre-budget submission to the Department of Social Protection addresses some of the core issues and calls on it to provide for a cost-of-disability payment in budget 2027; provide an emergency payment for 2026 of €400; deliver a meaningful increase in social protection welfare rates; provide additional supports for people with disabilities to address the energy and fuel crisis; and develop concrete measures to promote the employment of people with disabilities. I will be happy to expand on these points later.

Action is needed across all Departments, not just the Department of Social Protection, to create a more level playing field and enable people with disabilities to achieve financial independence on an equal basis with others. In that respect, we welcome the commitment in the national human rights strategy for disabled people for a whole-of-government approach to disability rights, ensuring each Department will play its part.

I will hand over to Áine Dunne from Rehab Group Shannon, who will tell the committee something of her lived experience of disability and trying to achieve financial independence.

Good morning. I thank the committee for the invitation to speak today. I am from Shannon in County Clare and I am here to share my story as a person with a disability who is visually impaired and has a learning difficulty. I am proud to live in my own house, which I rent from Clare County Council. I pay my own bills, but the cost of living is getting harder. My electricity bills are getting higher all the time. Food is also getting more expensive, and I cannot afford a lot of the food I like. I work 19.5 hours a week on a community employment scheme with Enable Ireland. I would be worried I might lose some of my disability allowance, which I rely on, if I did extra work. The system keeps me trapped on a very low income. At the same time, living with a disability is expensive. I have to pay €20 per month for my prescription charges and I am also charged €30 to get my necessary blood tests every three months, even though I have a medical card. Because I cannot drive, I also have to pay for taxis to get to my medical appointments in Nenagh every six months, as public transport does not work for me to get there. I often have to pay for taxis to go out with friends, as public transport is not reliable and with my visual impairment, I do not always feel safe.

I am one of the lucky ones. I have my council house, but it needs work to keep me safe. For example, right now, I need to install a handrail in my shower to prevent me from falling. I do not have the extra money to pay for this, but I would have to wait a long time for the council to do the work. I also have to pay €700 per year to get my grass cut as the council will not do it, and I cannot do it myself. There is no money left at the end of the week after paying bills and buying food. I recently joined a céilí club, but there are also costs and it is expensive. I am doing my best to manage, but the current system is not working. I urgently need a cost-of-disability payment so that I can be financially independent and live the life I want. I thank the committee for listening.

I thank the committee for the opportunity to address it today on behalf of the Irish Wheelchair Association. I want to frame this discussion clearly as a policy issue concerning the State's obligation under Article 28 of the UNCRPD, namely, the right of people with disabilities to an adequate standard of living and to social protection. From a policy perspective, counting the cost requires a recognition that people with disabilities experience structurally higher living costs. These are not discretionary expenses but are essential expenditures linked to participation, including transport, personal assistance, healthcare, assistive technology and accessible housing. However, current policy does not consistently account for these additional costs in systematic or evidence-based ways. As a result, income supports frequently fall short of enabling financial independence, instead reinforcing income inadequacy.

There is also a clear policy gap in how we approach employment. While labour market participation is a stated objective, existing systems can create disincentives to work, particularly where access to essential supports is conditional on income thresholds. A policy framework that effectively penalises employment by risking the loss of supports is inconsistent with both Article 28 and the broader activation goals.

In addition, access to appropriate housing remains a critical structural barrier. The limited supply of accessible and adaptable housing constrains choice, independence and financial security for people with disabilities. This is not solely a housing issue. It is a cross-cutting failure of planning, design standards and investment policy. From a policy standpoint, delivering on Article 28 requires a shift from minimum income maintenance to a comprehensive model of economic inclusion.

This includes developing and implementing a robust methodology to measure the additional cost of disability and inform policy and budget decisions; ensuring income supports are adequate and indexed to reflect real living costs; reforming employment and social protection systems so that work is always financially viable and does not result in the loss of essential supports; accelerating investment in wheelchair accessible housing and transport infrastructure; and embedding the meaningful participation of people with disabilities in policy design and evaluation.

Ultimately, financial independence is not an aspirational goal, but a rights-based obligation. Until public policy ensures that people with disabilities can achieve an adequate standard of living without experiencing disproportionate financial hardship, the State will not be fully meeting its commitments under Article 28.

I will now pass on to Mr. Lynott to talk about his lived experience.

Dia dhaoibh ar maidin. Ba mhaith liom mo bhuíochas a ghabháil as ucht an deis seo a fháil labhairt le coiste an Oireachtais. I hold a degree in history and philosophy from UCD and a first-class honours master’s degree in library and information studies, and I am an author. I am also an incoming clerical officer at the National Disability Authority. By any metric, I am an ambitious professional. Yet, under Article 28 of the UNCRPD in Ireland, my ambition is structurally penalised.

For the past year, I sat in a psychological deadlock, resisting entering the workforce because financial support only existed as long as you accepted a dependent, restricted role. If I advanced, I risked a catastrophic cliff edge by losing my disability allowance and its vital role as a gateway to other crucial disability supports, not least the telephone allowance, fuel allowance and so on.

Higher education funded my academic personal assistance, PA, but that support completely vanishes in employment. Instead, the Employment Equality Acts place the onus on employers, where the cost of personal assistance is routinely dismissed as a "disproportionate burden". Across the Civil Service, I have encountered the same misguided institutional wisdom that workplace independent living support is akin to hiring two people for the same job. This happens because we lack a centralised, multipurpose disability fund shared across all Departments. When I sought economic options, the system shut the door.

Enterprise Ireland restricts funding if it is perceived as a vehicle for personal financial independence rather than a mass export employment business. Furthermore, my application for the back to work enterprise allowance, BTWEA, was denied by the Department of Social Protection and it stated, "Market rank suggests your business is an already existing entity with a customer base, which, for that reason, is not suitable for the BTWEA."

Success in any enterprise comes with the fear that I would lose my safety net and would not have the wealth to outrun the inflated costs of cerebral palsy. The economic vulnerability is worsened by volatile policy decisions such as removing the Christmas disability allowance bonus in budget 2026. While long-term measures like the free travel pass are preferred, short-term income remains significant for those below the poverty line. Crucially, cutting this missed a vital opportunity for the ESRI to gather research and utilise the allowance like a live pilot study, tracking what a permanent cost-of-living payment looked like on an individual budget level.

Financial independence requires options. Our State limits those options because it views disability exclusively through the narrow lens of social welfare and healthcare. I have pressed ahead anyway, but no citizen should have to risk their survival to fulfil their potential.

I thank Ms Carthy and Mr. Lynott for their opening statements. I propose that we publish the opening statements to the committee's website. Is that agreed? Agreed.

I will now invite members of the committee to put their questions. When I call members to speak, I ask that they adhere to the agenda items that are scheduled for discussion. Members have seven minutes for both questions and answers.

I thank all the witnesses here this morning, particularly those who have told us of their personal experiences and stories and highlighted the hidden costs associated with the cost of disability, which many may not be aware of. It is very clear from all of the contributions that we need a whole-of-government approach and a rights-based approach to addressing this. Ms Costello from the Rehab Group mentioned the whole-of-government approach. Could she elaborate on that in terms of what it looks like from a rights-based perspective?

In respect of the idea of addressing the cost of disability, it is incumbent on the Department of Social Protection to make sure that there is a payment and that people's rights under Article 28 are vindicated in that way. It is also important that all Departments assume responsibility.

We outlined some of the costs there are in terms of transport, housing and medical costs. It is really important that there be joined-up thinking across the board. Public transport in particular is a huge obstacle to people. If someone cannot get to a job, cannot get out to meet people socially or engage in their community and participate, they are completely excluded, so transport is a really important issue.

Similarly, there are many hidden health costs that people with disabilities face. They very often have increased medical costs. We heard from Ms Dunne about having to pay €20 for her blood tests, which she should not have to but does. There are also prescription charges and taxis to and from medical appointments because the doctors are not available in Shannon or Limerick where she is based. All of these issues are hugely important.

There must be a co-ordinated approach right across the board, particularly to the employment of people with disabilities, ensuring that they have the right to work, are not afraid to lose any of their benefits and can continue to live the lives of their choosing. That is what is important. To do that, we need a whole-of-government approach. It is not just the remit of one Department, but of all of the Government.

While we welcome the commitment that is in the human rights strategy and know that the Taoiseach has established the task force, it is quite important that these matters be advanced in the lifetime of this human rights strategy.

In terms of those hidden costs, some of which Ms Dunne and others mentioned, could Ms Dunne outline more how those impact her? We mentioned transport and health costs. I presume that there are repairs to housing as well. How do the costs vary on a monthly basis?

Would any of the witnesses like to comment on the income disregard and the impact of that? What needs to change there?

Transport has hidden costs for rural travel. The free travel pass only works if there is a bus or train running when and where you need it. Due to my visual impairment, I cannot drive, so I depend on my parents, who are getting older, or I have to pay for taxis, which are very expensive. Public transport options between rural areas and towns like Nenagh are often limited. There is a massive extra cost that non-disabled workers do not have to think about.

My doctor was based in Limerick. He moved all his stuff to Nenagh. I did a trial run on the public transport with my mother. The bus was at 6 o'clock and it did not turn up. The next bus was not until 9 o'clock and I would not have got home to my house until after midnight. If it was in the wintertime, it would be pitch dark. I have to go every six months, so I have to go in the wintertime.

I wish to raise this thing about disability income disregard. We have to realise that disability payment is given on the grounds of disabilities. It does not disappear when you has a job. There is this idea that it disappears when people have a job. We should still have that specialised disability fund available because that is separate to your wages. That is specifically designed to fund the additional costs of disability that we are talking about here. At the moment, when the income disregard is put into place, that means that the wages are expected to fund everything, including the cost of disability. That should not be the case. There still should be a specialised disability fund designed to fund the cost that we are talking about.

To go back to the initial question around the additional cost piece, for our community the big item issue is access to services, therapies and so on and families accessing those privately. That has an additional cost. In his opening statement, Mr. Carroll referenced our Same Chance report, which referenced the autism tax that families experience or is burdened upon them as a result of not getting access to public services. For example, for many of our families, there might be two or three children in the household with autistic needs who may require access to speech and language therapy, occupational therapy or psychological services. On average, those cost between €120 and €160 per session. The initial assessment is even more expensive. That has a bigger impact on the child accessing a school placement.

We saw the roll-out of the in-school therapy programme. While 45 special schools will have in-school therapy supports, that needs to be rolled out across autism classes within mainstream schooling and mainstream schooling in and of itself. By families not accessing those therapies and so on, they are burdened with those additional costs. I sometimes take umbrage with the concept of the term "hidden costs" because they are very visible costs that we have all referenced throughout time such as, for example, the housing adaption grant. Many of our community members have to pay the additional cost upfront on those pieces either themselves or the contractor as such. In the absence of having those financial supports, the individual may not been in a position to get those housing adaptations. Those are two quick points.

There needs to be an overall reform in relation to social protection. Regarding the payments people get, whether it is disability allowance, and the disregard, which is causing a huge problem, we are looking at people who can hold onto their medical card for three years and their travel pass for five years now. That is just a false sense of security because nothing changes after those three years. While the Government is pushing that kind of narrative that you can hold onto your benefits, you really cannot. You can onto them for three years. Again, it is a real false sense of security for people with disabilities. People are simply not feeling comfortable in relation to taking up employment and are being disincentivised all the time. There are lots of other bits and pieces that are related to taking up employment because everything is means-tested. We need to move that to what people need to be able to work or live their lives rather than how much one earns. It is not even just as the individual but is looking at family income. We need to be looking at what the individual's income on its own is, rather than taking family income into account

I thank the Cathaoirleach. I thank all the witnesses for being here. It is great to see the organisations represented and, slightly more importantly, to hear the lived experience of the service users and from the communities to get that full sense of understanding of what this means to them. From Ms Dunne, I really got the importance of this cost of disability payment and equally as important is the removal of those additional costs. Senator Harmon has touched on this a good bit already but I wish to follow up on it. It is about that €20 prescription cost and all those little things that add up, as well as the housing. I am quite shocked about the housing. In my own county council in Meath, it uses the UD+ design for a lot of its housing now. It is the leader in age friendly measures across the country and is well used to the universal design. I do not see how it would allocate a house to somebody that was not suited to their needs without the maintenance being done, a grab rail being in the shower and all those things. It just seems bizarre. I ask Ms Dunne to tell me a little bit about that. Would she have to apply for a housing adaption grant to get that done even though they are aware that she probably got the house based on disability rather than income?

I am not sure what I would have to do. My circumstances have changed. My health has got a bit worse since I moved. I have been in the house for six years but my health has got worse. It is hard to do. I do not know where to start regarding what to apply for. I do not-----

Everything is a battle.

I am visually impaired. When I first applied for my disability allowance, I was turned down three times by the Department of Social Protection. Three times, it told me that I was not disabled enough. I am blind in my left eye, and I was told that. That just shows how ignorant people are. Telling somebody who blind in one eye that they are not disabled enough really hurt me. I do not trust sometimes because I have been pushed back and let down so many times. I have lost trust in certain people. It is just hard.

I am sorry to hear that. Does Ms Costello wish to come in?

Ms Dunne might say something else. She has gone to the council to get repairs done to her house. Does Ms Dunne wish to talk about that? She said it is like talking to the wall.

Yes. I ring to say that I need this and that done. I could be waiting weeks for it to be done. I had to pay for it. When I first moved into the house, my roof was covered in moss and my gutters were covered. I was in the house for a year and the council said it would do it. I had to pay €500 out of my own money to pay for somebody to clean, even though the council said it should have been done before I moved in. When I said that to the council, it responded by saying it never said that. It has gone back on its word. I had to fork out €500 of my own money to pay somebody to clean it for me even though the council should be doing it because it is my landlord. It was the same for cutting my lawn. I was quoted €700 for the year to cut my lawn by somebody, which I would have to pay out of my own money. I should not have to be forking out that money to pay that. It is unfair.

Ms Dunne does not need it. Is that the experience of many of Rehab Group's service users?

That is the experience of many of the adults who use our services. We do regular focus groups with people for our pre-budget submissions. The kinds of stories that we hear back are that they are not living in suitable accommodation and they cannot afford the adaptions. Regarding the housing adaption grant, Ms Carthy would be more expert on this than I am. There are huge issues with accessing sufficient financing, getting it on time and working through it with local authorities. In the quotes that we have provided to the committee, we have people saying that they go to the Society of St. Vincent de Paul for food vouchers. Some people said that on occasion they have gone to food banks because they are faced with these choices. As has been said here by many people, it is under Article 28 of the UNCRPD.

We now have a national human rights strategy for disabled people as well. People should have access to food, heating and an adequate income as a right and not because the Department of Social Protection deems that it is something that should be given. That is what we mean when we say we need a rights-based approach. We need the Department of Social Protection and other Departments to ask what they need to do to ensure that people can live equally in society. We do not need them to ask how someone qualifies for a payment and then for the person to be told they do not.

We had an advocacy conference in March. One of the speakers, Dr. Austin O'Carroll, who might be known to some of the members, said that the idea of a cost-of-disability payment is a little bit anathema in a way because it implies that people who have a disability actually incur a cost. When we come up with the payment, maybe we can come up with a more equitable title for it as well.

In the paperwork, the additional cost of having a disability is given as 22% to 33% of disposable household income. Are those covered by the witnesses' organisations in that range, or are they above or below it? I will start with Mr. O'Flanagan.

It depends on a family's circumstances and so on. For example, if we look at families where one parent becomes a full-time carer, which is my situation, there is a loss of income from that particular employment that was coming into that household. Not everybody who is autistic, or who has a child who is autistic, has to give up work to go into that caring role, but it sometimes is the case. That is a particular factor, but it also depends on the needs of the child. If they need those kinds of therapeutic supports, they can cost significant amounts. As someone in our Same Chance report noted, it is like having an additional mortgage to meet those costs. The social pursuits of these individuals are also affected.

If I look at my family's situation, my brother, who is 17 this year, has an intellectual disability. He received the domiciliary care allowance, DCA, from the time he was three years old right up until last year. We subsequently had to apply for disability allowance for him. However, for families who receive the DCA, it is €380 a month. It went up by €20 in the last budget. As we said at the national economic dialogue on Monday, that increase of €20 did not necessarily cut the mustard for what actual costs were incurred by families. My brother has particular sensory needs, and we probably spend on average over €100 a week on sensory products for him to play with, as such. It could be shampoo, and he loves Fairy Liquid, for example, but those things cost, and they are additional costs that are specific to his needs.

Going back to the Deputy's original question, what those margins and costs are depends on a family's circumstances.

For many autistic people, some of the things they might look for support with are access to sensory clothing or adaptations that can help meet their sensory needs. Examples include clothing and food, as Mr. O'Flanagan mentioned, but also different things like noise-cancelling headphones and other things that might help people to navigate the public environment as well.

Another thing worth mentioning is that a lot of autistic people have significant health needs in addition to being autistic. For instance, many people in our community also experience chronic health needs. These carry additional costs because they may need to access other therapeutic supports, healthcare and medical treatments.

Many autistic people also have significant mental health needs. For many autistic adults, due to the barriers people experience accessing mental health services writ large and because there are no public pathways to accessing or securing an autism diagnosis or follow-on supports within the HSE, they incur additional costs accessing these supports privately, as well as other supports like counselling, psychotherapy and mental health services. For many autistic adults across the community, those needs are co-occurring to their own experience of being autistic and incur additional costs.

I thank the representatives from the organisations for coming in this morning and giving us the benefit of their opening statements, which are very helpful. I give special thanks to Ms Dunne and Mr. Lynott for giving us their lived experience of living with a disability. Both said that they were probably the lucky ones, in that many other individuals would not have either a house or employment.

Under the charter, the State has an obligation to ensure that people with disabilities can live independently. That means access to employment and housing among a whole range of other things. To do that, people need to have an adequate income. There are such a range of figures out there in relation to what the cost-of-disability payment is and what it should be. The Department had a figure of €11,700. There is also a figure out there of 52% to 59% of household income. There is the figure of €488 to €555 per week also. In the witnesses' experiences of the people they deal with, are there categories within the disability family that have particular ranges of need in relation to income?

Regarding employment, and as Ms Costello said, we probably have the lowest rate of employment among people with disabilities in Europe. Even where they are in employment, they tend to be in part-time and low-paid jobs, generally because of the fear that people will lose all or part of their disability allowance and some of their secondary payments. This has to be addressed, but what are the other main barriers that are there in relation to employment for people with disabilities?

I also have a question for the representative from the Irish Wheelchair Association. We regularly come across the lack of availability of wheelchairs, particularly motorised wheelchairs. There are very long delays and in some cases, they are not available at all.

There is a big difficulty in relation to housing. What particular measures would the witnesses recommend to see if we could actually get to a situation where people with disabilities have a realistic chance of getting to live in a local authority house in a reasonable period of time?

I will respond to some of those questions. As to the cost-of-disability payment, a lot of the organisations have come together and agreed on the implementation of a universal payment to start off at €55 a week. That is really just to try to get something moving forward, but we also feel that there needs to be really constructive consultation so that we can look at what the Deputy is talking about in terms of the different levels of need. There are some people who would not have a huge extra cost of disability, and we then have other people who, because of their disabilities, would encounter a much higher cost of disability. There is a lot of work that needs to be done around that second piece.

Looking at the housing piece, we have been pushing for many years for a change in Part M of the building regulations so that there is an introduction of a percentage of universal design plus housing. Universal design plus housing is wheelchair liveable housing. At the moment, the regulation just stipulates that all dwellings should be built as wheelchair accessible.

All that means is that a person can get in the front door, can get into the kitchen and the sitting room, and there is a bathroom downstairs, which is never big enough for anybody to use. However, they cannot live in those homes. The councils have targets for people with disabilities and a lot of the councils look as if they are exceeding their targets, but part of the problem is that it is covering all people with disabilities. There are a lot of people who would not have a physical disability who are being housed and people who have mental health issues who are being housed, which is great, but there is no change for wheelchair users because the type of house they need is not being built. Until we make that change and get a percentage of those houses into the regulations, nothing is going to change for people with physical disabilities in that space.

As Ms Costello said, the housing grant is a major problem. While it was reviewed two years ago, the amount that has been made available does not meet building costs at all, so people are left trying to find the extra amount of money. That just does not happen. Going back to the cost of disability, given the income of a household with somebody with a disability, whether it is social protection income or employment income, they are often starting off at a minus amount of money because of the money that they are spending on specific things for the individual with the disability as well as overall heating costs, transport costs and everything else that goes with that. There are lots of different pieces that go with being in that space.

The Deputy mentioned the lack of motorised wheelchairs. From my understanding, the issue is not necessarily the lack of motorised wheelchairs, but the lack of funding that is being put in through the HSE for those people who are entitled to it. They are waiting months, sometimes even a year or two, for their specialised wheelchairs. A lot of that is very much down to funding in different regions rather than the lack of availability of equipment.

I will address the question on barriers to employment because it is a hugely important issue. I agree that a lot of people are either not employed or are underemployed. We talked about the earnings disregard earlier. That has the impact of people who are in employment not looking for career progression. For example, people on three-day weeks are not wanting to work five-day weeks, or people are not actually going for promotion because they find that they are inhibited.

There are other barriers as well. We feel that one of the big obstacles is the lack of support with the wage subsidy scheme. I know it was reviewed recently but the members of this committee will be very familiar with Rehab's views on the increase of rates. There are seven employers who employ more than 17 people with disabilities. Last year was the first increase that was received in over four years. The increase for enterprises with more than 17 people was 55 cent, notwithstanding the fact that there has been more than €3 of an increase in the national minimum wage. There should be a link with the wage subsidy scheme to the national minimum wage. We have made a submission on that in our pre-budget submission.

There is another aspect of the national minimum wage. Something that our students from the National Learning Network, NLN, and the people who use the services of RehabCare say to us all the time is that they wish that they could avail of the wage subsidy scheme to find employment but they are restricted by the 15 hours a week. We are looking for the 15 hours a week to be reduced to eight hours. That is in line with any of the policies in relation to work. The work and access scheme accepts that working eight hours is considered to be like a full week's work and the person can access its grants. There are lots of means by which the person can access supports but it is actually really difficult.

A final thing to say on barriers to employment is that there needs to be more disability awareness training for employers as well as encouragement of employers to employ people with disabilities, including highlighting the benefits of it.

I thank Deputy Toole for allowing me to come in. I apologise that I have to do a Commencement matter in the Chamber at 10.30 a.m. It is on a disability-related matter with the Minister.

I am so sorry that everybody here has to tell their personal stories. We as a community have to do this over and over again. From experience, we quantitatively understand the cost of disability. Qualitatively, though, there is also the stress, the fear, the worry and the moral distress. I was really struck by the phrase Mr. Lynott used of being "structurally penalised" for being disabled. It is shocking. It might sound like an overstatement but this is an ableist state. Did Ms Costello say that the ESRI said that the additional cost of disability, which is the additional cost before a person buys clothes or pays the ESB bill, was €488 to €550 per week?

Yes.

That is €25,376 to €28,600.

Those are the figures that the ESRI came out with.

The disability allowance is just €13,000 a year, so it might not even reach half the cost of disability. I have been saying that the disability allowance should be a non-means-tested universal payment. Quite clearly, it needs to be doubled.

We are all living the dream, supposedly, but in the witnesses' experience, what is the resistance on the part of our fellow citizens who can make these decisions in government and in the various agencies? What is the cause of their resistance to honouring the obligations as set out in Article 28? That is my first question.

I am sorry to pick on Ms Costello, and this might not be an easy question to answer, but from her experience as a former Member of the European Parliament, does she think we are different from our European partners culturally when it comes to disability? We had the European Disability Forum here and it said that, in most European Union countries, income and disability allowance were disaggregated and there was no link made between them. We impose this kind of Dickensian threshold. It creates a fear in people, with them not going for promotion, including an ambitious young professional. I am embarrassed to hear Mr. Lynott say that he cannot self-actualise in the way that all other citizens can because of a structural inequality, or worse, a structural penalty. A barrier can sometimes be perceived as a passive thing but penalisation is an active and premeditated set of punitive arrangements that are imposed on us as a community. This is ableism writ large. I am sorry for the vague questions and I apologise in advance that I have to go.

The Senator mentioned resistance. The main resistance is that disability is primarily seen as a healthcare issue or a social welfare issue. The money for disability is primarily coming from those Departments. If we want funding for other areas or outside-the-box thinking about a pioneering kind of funding, then it might have to come from another Department. That is very difficult because another Department will say that it is not part of its remit or not a healthcare issue.

There are several pockets of funding for different things. If people want a wheelchair, there is one sort of funding. If they need healthcare, there is another sort. If it is about university or education, there are all sorts of funding. This is what we mean about the joined-up thinking that needs to happen. Multipurpose disability funding can be agile and flexible.

The Senator asked about culture. I do not think there is much by way of culture. There needs to be more progressive and proactive decision-making. We see the kind of services available in the Scandinavian countries, and there are cultural similarities. I think it is about decision-making rather than culture.

To go back to the first question on the reticence or reluctance for change to come from the State, politicians, by their very nature, want to make a difference. Everybody who gets into politics wants to see a difference for their constituents and for the country as a whole. The system fears to change. It goes back to balancing the books and so on. We know that all these measures will involve an additional cost, whether it be the in-school therapy programme, the cost-of-disability payment, changes to the adaptation grant or whatever. The list is endless. There can be reticence within the system to change, although not necessarily on the part of individual politicians or Ministers. The national human rights disability strategy is a really important document. Obviously, we signed up to the UNCRPD a number of years back. The latter should not just be seen as an aspirational document; it should be something that we actually put into practice. The national human rights disability strategy is the avenue for that. As we referenced on Monday at the national economic forum, in the forthcoming budget, we should see real meat put on the recommendations and objectives in the national human rights disability strategy. That will be quite telling. This will be the first budget brought in with the national human rights disability strategy in place.

I will pick up on Senator Clonan's second question. One of the things that is worth mentioning with regard to the Same Chance report, which the Commission has focused on as relating to disability and disabled people's experiences of poverty and social exclusion, is that recent reports have highlighted that 38% of disabled people experience unemployment and underemployment. That highlights the gap, but it also highlights that 30% of disabled people are at risk of poverty and social exclusion. Those are the parts that we can measure.

Going into the statistics, reports have focused on one matter, which the European Disability Forum also mentioned in a recent human rights report, namely that the Irish experience is particularly stark in the context of employment, poverty and social exclusion. This relates to our national statistics. In the CSO's survey on income and living conditions, we found that 32% of disabled people who were unable to work were at risk of poverty compared with 5.4% of disabled people who are able to work. We also know the impact of the cost of disability and, when those supports are taken away, how much more disabled people are at risk of poverty and social exclusion, when those supports are taken away,.

The resistance comes from the lack of foresight in seeing people with disabilities and the money that has to be spent on them as an investment in the future rather than just as what is happening now and the amount of money that has to be paid out. If the money is there for people to start living independently and become employed, if that is where they can go, they become taxpayers, but their health is also being invested in, which means that less health funding is needed in the future. It is more about the lack of foresight and investment in people with disabilities.

I thank the witnesses for giving up their time and coming here today, especially those who shared their personal stories with us. It is not easy. It is awful that they have to do that, but I appreciate them sharing their stories. For us to gain an insight into something, it is great to speak with people who have lived experience. In that context, I thank all the witnesses.

To be truly independent, people need to be financially secure and financially independent. Today's discussion is appropriate. Much of what I wanted to ask has been asked by my learned colleagues, so I only have a quick question for the witnesses. I will start with AsIAm. What steps can be taken to reduce barriers to employment and improve workforce participation for autistic people?

In our Same Chance report, we identified two types of barrier. One is getting employment in the first instance and engaging with the employment services that exist around the country. The second is when an autistic person is in a job and some of the barriers that might be present. For us, it is about getting more autistic people into employment. That is about acknowledging the barriers that exist in the first instance, and working with organisations and companies. Part of the work that we do in our employment team involves going to businesses, speaking to them about the autistic needs of an individual and identifying how they can make their services more accessible. We heard earlier about some of the schemes that are in place and employers not knowing the full extent of the schemes available. As a result, there is a need to educate people.

There is another element which comes from employers, namely situations where there is almost a fear of hiring an autistic individual or a disabled individual because of the misperception to the effect that the employer might be subject to more litigious action if, for example, reasonable accommodations are not put in place. Employers have a legal obligation to put reasonable accommodations in place where they are needed. Education is needed. This would involve organisations going into businesses and demystifying what is involved and getting them to actively work with us. In AsIAm, we have a number of one-to-one coaching supports, where we go into businesses and support them along that journey. We have linked in with business organisations and representative groups over the past year, with IBEC and with insurance companies, to support them in coming on a journey with us. In summary, it is about education, training and removing those figures.

For many people in our community, barriers can be experienced in their jobs, for example, in the context of navigating workplace structures, but also being in environments or situations which might not be particularly accessible to autistic people, whether it is bright lights or an open workplace environment. People have said that they have benefited from the move to working from home and would like more supports from employers that will help to meet their sensory needs. The other thing that might be mentioned is that many of the reasonable accommodations that autistic people request from employers do not necessarily incur a large financial cost. It might involve an adjustment that they might make to an employment practice or a policy, for example. It might make the difference between a person being included or not. It could include working from home or flexible working hours. Employers should be empathetic about any supports that might be required in the context of, for example, healthcare.

Employers must also realise that if employees are autistic and have occupational health needs, they have a double effect on their ability to navigate the workplace, perform their duties and progress in their career afterwards, if that makes sense.

I thank Mr. Carroll. Mr. Lynott is obviously an ambitious young man. Fair play to him. What better supports policy wise could be brought in to encourage entrepreneurship or ambition for people with disabilities?

Self-employment for people with disabilities needs to be looked at. The mandate of Enterprise Ireland is to create mass employment, encourage exports and things like that, but some kind of self-employment fund would help. If we think about it, being self-employed allows those with disabilities to work their own hours and manage their energy. With cerebral palsy, energy is a big thing. Things like sitting up straight can be physically tiring. Self-employed people who have a disability can control their own hours and have total control over the adaption of their workplaces. They do not have to negotiate with employers. They can do it all for themselves. Self-employment is one thing.

When it comes to traditional employment, one of the big things is independent living support in the workplace. Where I live, one of my neighbours went to college like me. She said she had not bothered going into the workplace in a traditional sense because she cannot get help with the bathroom or anything like that. The burden of those costs is entirely on the employer. Obviously, it depends on how big the employer is and how much of a budget they have. The burden for independent living supports needs to move away from the employer. It needs to be a part of this multipurpose disability fund that can help and give people the independent living support they need to enter the workforce. Those are my thoughts in that regard.

I welcome all the witnesses. I thank them for meeting with us. I also welcome those in the Public Gallery. I wish to make a special mention to Sue and John from the Rehab Group in Ratoath, County Meath. I commend local employers, Sweeney’s Centra and Ratoath dry cleaners, who provide employment to some of the group. I am honoured that they have travelled in. I appreciate the effort the witnesses all made to get here today, because, as some of them mentioned, there are systemic barriers, especially with regard to public services, accessibility, etc.

My first question relates to those barriers. As mentioned, when it comes to the cost of disability, each person has unique needs. There can then be common needs that systems and services, such as the health service, local authorities and county councils, can help to address. There are gaps in that regard, however. I will start with Ms Dunne. She referred to public transport. From her experience with the focus group and her friends in the Rehab Group, what things would help with public transport? I will move along to Mr. Carroll and Mr. O’Flanagan and then to Ms Carthy and Mr. Lynott in sequence regarding the gaps in public services, access to living independently and today’s subject of where disability costs arise.

Public transport should be reliable. It should not depend on anything. That is unfair to people with a disability. I have a free travel pass, but if I need to go somewhere, I sometimes cannot use it because there is no bus. I have to be dropped somewhere and then picked up or I have to get a taxi. It is not accessible. Everywhere should be accessible to people with disabilities, regardless of whether they have a bus pass. It should be reliable. My appointments are in Nenagh, but the buses between Nenagh and Limerick are every three hours. That is not very good. In the wintertime, it is dark by 5 p.m. The last time, the bus did not show up and the next bus was another three hours after that.

Has Ms Dunne ever been asked how her journey was by, say, Bus Éireann – it may not be the provider in this instance – the National Transport Authority or any of the other organisations involved?

No, they have never asked me.

I will move to Mr. Lynott and Ms Carthy, and then to Mr. Carroll and Mr. O’Flanagan. In terms of surveying, are their organisations ever asked how their transport plans are and what can be done to help improve things? Ultimately, that is where the extra costs lie. If the services do not meet the needs, people end up going private more often. Do the witnesses have an opinion to express in that regard?

Yes, there are a couple of different things. Most of the transport companies have disability user groups and we have representatives on them. A lot of the feedback comes through those groups. It is about going to the next step beyond that, however, because there are huge issues in relation to where the buses are, especially for those living in rural areas.

On top of that, from a financial point of view, people with disabilities feel things are going backwards. As members will all be aware, many years ago, we had a mobility allowance that went towards the extra cost of transport. That was taken away with the promise that something else would be put in place, but that never happened. The transport grant to help people get their first car was also taken away with nothing else put in place, and here we are ten years later talking about the implementation of a cost of disability. There is a lack of joined-up thinking about how policies are working.

At the moment, the Government is looking at reviewing the disabled driver scheme. What we are hearing is that while it is putting in an adaption scheme, which seems to be a positive piece, it is looking at taking away the revenue incentives. Therefore, people will not be able to buy a car in the first place. The worry is with this thinking that we are moving forward and reviewing different schemes, but people with disabilities actually end up suffering at the end of these reviews. That is the piece we need to be looking into.

I completely echo what Ms Carthy has said about barriers to accessing transport. Many autistic people and families share similar barriers in accessing public transport in the first instance. While Dublin Bus and Irish Rail have improved their practices and policies quite a bit, we know they are still like a patchwork quilt across the country in terms of people’s experiences.

The other point that is worth mentioning and picking up relates to access to independent living. When it comes to our community’s experiences in this regard, there are a number of pieces to the puzzle. We echo what a lot of organisations have indicated and much of what has been said across this room around access to personal assistance and personalised budgets. For many autistic people, a big part is having the services in the first instance but also having the freedom to be able to make choices around how they wish to access those supports, for example, as being provided with a budget to access healthcare and personal supports.

Regarding PA hours, as my colleague has mentioned, it is also really about making sure that there is a seamless transition between work, employment and community life. We would also echo many of our community's points around legislating for the right to personal assistants. The final point is that in the last year AsIAm has opened two communities or hubs that cover the two CHO areas around Galway, Mayo and Roscommon and around south Dublin, Kildare and west Wicklow. That been a really positive development because it allows people to get supports in their own community but it also covers that point about independent living and tackling the isolation and the social exclusion part of it. We know a lot of disabled people can experience loneliness, isolation and barriers to mental health and well-being. These are something we would like to see brought out more across the country as well.

I will make one point going back to the accessibility of services and so on. We have the public sector duty on the Statute Book, which speaks to public services being accessible for individuals who are disabled. Our public services are not meeting the standard that is envisaged within that legislation that goes back to the UNCRPD. One example is the school transport system for members of our community, and the inaccessibility of that particular service. That scheme in and of itself needs to be looked at in its entirety from a procurement point of view but also in terms of the roll-out of it across the country. Many of our community members and families do not have access to school transport. The school bus is not appropriate for them due to the sensory needs of the child and sometimes the taxi services that are provided could have two or three other children in that car with different, almost competing, needs. Some might require quiet space, and if the child is having a meltdown, for example, or is overwhelmed in that space, that can then have an impact on another child. That scheme is an example of where public services from a school transport perspective are not meeting the needs. A grant was introduced a couple of years back for parents, which they can tap into at the end of the year if they did not avail of either the taxi or the bus services, but that is a year-end payment that is given in lieu.

To make a small point about Irish Rail and the DART, at the moment people have to rely on staff to get a ramp out for them. That requires calling in advance and often you have to build up a relationship with the staff at your local DART station. Comparing that to when I went abroad to Paris, for example, you had a bus and a train. On the buses in France, and on the Tube in London, there was a button to press and the ramp would automatically come out. You did not have to rely on the staff. You just have to press the button and the ramp would come out. That means that you could do spontaneous travel. Spontaneous travelling, without having to call someone in advance, is a huge part of independence. The Irish Rail trains and the DARTs definitely need to be updated to allow for automatic ramps and that kind of thing.

Gabhaim buíochas leis na finnéithe go léir. The problem seems to be that we do not have the emphasis on participation in society. A number of us were lucky enough to be over at the United Nations where it was dealing with 20 years of the UNCRPD. A general ethos that was coming across the board was the idea of mainstreaming in as much as possible. There was an emphasis on reasonable accommodation just being built in and then on universal design. Not to emphasise medical but that was everything from training from the point of view of doctors or healthcare workers to be aware of how they dealt with people right through to buildings, settings and then beyond that to educational set-ups. That is the issue that is missing. As I think Mr. Lynott said, it is that idea of - I will call it medical or paternalistic - that here are disabled people who we will look after but we will not put all of the pieces together and will get rid of one scheme that probably only so many people could apply for. When dealing with the disabled drivers scheme or disabled passengers, we are into primary medical certificates and who that actually applies to and then there are all those other schemes that were gotten rid off. We need to do something far more comprehensive.

If I go back to the cost of disability, I have over-made this point but I will make it again. There is this idea that there is an acceptance by Government that there is a need to do this because it was given last year and it is being planned for. We have a difficulty in relation to what exactly has been planned for. We have to emphasise that ESRI report. It is €488 to €555 but there is also a higher level if we are dealing with more bespoke issues. I think it is up to €800 a week. That is the reality for people so we are as well to have the real conversation on that. I have no question on that; we just need to see it delivered. It is also delivered across the board. The number of people who have told me this. A particular man came in saying he had always worked and had been very lucky with that and therefore was not on any social welfare payment, but he had other issues. Due to mobility issues, he needed a bespoke pair of shoes. We are talking about a cost upwards of €1,000 that nobody else could consider unless they were shopping in places where I would not be shopping, for names of shoes I cannot think of. He just needed this as an absolute necessity. That is a cost that most people do not even have to think about, and he probably does not have some of the issues that some of the witnesses have. We just need to be real on that. We need to implement it as soon as possible. We also need to accept that if we actually introduced in-school therapies, as Mr. O'Flanagan and Mr. Carroll pointed out, we would be taking a huge cost off parents.

When we are talking about housing, we also literally go from a point of view of a person been given a full package and full care or nothing. I know local authorities do not always have the task forces in place that are meant be there. Some are better than others on it. In an awful lot of cases we are talking about supplying somebody with a house. That is grand if it is a child within a family setting and there are allowances for that, but they are not the only ones. Ms Dunne put it very well in the sense that she is not looking for a bespoke care package around this; she is just looking for very simple, reasonable accommodations to be made. The system is not even thinking about that because it never does. We know some people will need really intensive residential care and that is not happening either. We know the whole issue relating to the Before We Die group. It is about putting it all together. After all of that, and as usual I spoke for far too long, I get onto the big issue that people have emphasised and that is the idea of work. Mr. Lynott put it well when he spoke about self-employment. Ms Costello and I have spoken many times about the issues with the wage subsidy scheme and how it is not fit for purpose to facilitate employers to employ people with disabilities.

We should have a facility to have something like the wage subsidy scheme for someone who is self-employed but with the added costs that someone without a disability will not have. Then it is the relationship with employers.

If the Deputy has a question, he will want to leave time for the answer.

I know. On some level, in fairness, the witnesses have answered most things and have stated strictly what the problems are. If we are talking about employment, it is work and access, the wage subsidy scheme and dealing with that. The Minister of State with responsibility for enterprise, Deputy Alan Dillon, appeared before us. It is that Department building on its relationship with employers from a point of view of ensuring it knows about the schemes but also making sure these schemes work and talking to those who want to be employed and how we actually deliver this. After that diatribe, I will throw it over to Ms Costello, who will have no difficulty in answering that.

I thank the Deputy. We have engaged many times on the wage subsidy scheme, which, as the Deputy said, despite the review, is still not fully fit for purpose. We are hopeful that there is a recognition from the Government that it needs further reform and it will be done. We mentioned reducing the number of hours to qualify. That is very important. The rates also need to be linked to the national minimum wage on a graduated basis. The more people a person employs, the greater the supports he or she should receive.

I will mention one programme that might be of interest to this committee. The work placement experience placement programme is a very good programme, but we found that people with disabilities had difficulty in accessing that programme. Rehab Enterprises is working on a pilot scheme with the Department of Social Protection on this scheme, which is working well. That is where a person continues to keep his or her social welfare allowance and get a top-up on it. The person is placed in employment and Rehab Enterprises will support both the employer and the employee over a period of six months. The hope and expectation is that, at the end of that six-month period, the employer would take on the employee. We had called it the work-ready scheme, but we are piloting now under the work placement experience programme. It is working well. It is a small pilot. We would like to see a programme like that mainstreamed. Similarly, the IPS, which-----

We are not always good at mainstreaming pilots.

Yes, but that is what needs to happen now. That programme needs to be rolled out and there need to be more opportunities. I will also mention the IPS. We would be one of the biggest providers of IPS services. That service is particularly under pressure. It needs further investment. It proves to be very successful in placing people who may have mental health difficulties and who need additional supports moving into work. In all of these, we believe that there is a strong social return on investment. It is not just to be seen as a cost to the State. If the money is invested in the people who need these additional supports to live independently and equally, it will in the long run reduce the kind of supports that are needed with later interventions that are so costly.

I will pick up on Ms Carthy's point and maybe build on what Mr. O'Flanagan said earlier on our employment supports. One of the things we find that pose barriers to autistic people would be in terms of employer mindsets and attitudes. For example, as many of us mentioned this morning, there are still employers who have perceptions around the ability of an autistic person or who someone who has another form of disability to do work. For a lot of people, one of the things we have mentioned relates to Mr. Lynott's point on self-employment. A lot of the paperwork and the requirements are not necessarily conducive to supporting disabled people to work. It is needing that wraparound or in-person support to support people to access self-employment. There might be a role for local enterprise offices to be able to offer that support directly to disabled people.

One of the things we mentioned in terms of the IBEC roadmap for autism employment is that we called for a nationally supported employment programme. For people who are autistic and others who have supports that may mean they face barriers to recruitment and retention, it might offer an opportunity for them to build that relationship with employers in the first instance so that they can have the sense that people get to know each other before a work placement or before they can officially start in a role. It also helps to manage the transition between work and different facets of roles where some people may face difficulties. It might also help to address the barriers, in my experience, in terms of that disclosure and putting yourself out there in front of employers and looking for supports. In many of those situations, those processes or conversations would be had in advance.

It is about making it easier as regards accessing those supports for employers and employees. The biggest obstacle still is people's fear of losing medical supports or benefits.

I thank the witnesses for all the work that they do representing people across the various communities. The headline is "counting the cost". I do not see it as a cost but as an investment. It is not a cost on the State. We are investing in our people. Everyone is entitled to get the same opportunity and chance in life. It is the responsibility of the State to make sure that we put those supports in place.

In regard to financial independence and some of the issues that have come up in recent times, a person with a disability applying for social housing and is working has no income disregard for having a disability when the assessment is being done. That is wrong. That is something that needs to change with the Department of Social Protection. That has to be taken into account when doing the reckonable income and the means with regard to that. You cannot have a situation where someone is eligible but has stopped work and relied on the disability payment to be eligible. If someone is working, that should not go against them in their eligibility for social housing. There needs to be a disregard for the cost of disability built into the social housing application system.

Education was mentioned. It would have been involved and started with our joint committee on autism with regard to third level courses, now in 11 colleges for children with intellectual disabilities and autism. I have made contact with the Department of enterprise where I feel we need to have job coaches in place to work with the colleges, the students and the companies that are providing the employment opportunities and have the support over and back between the college. A great example is Trinity College in Dublin, where up to 40 companies are involved. Hugo MacNeill is the ambassador. A coach is in place who then works and helps people settle into employment and deals with any of the issues. That is something I am working on. I have spoken to the Department of enterprise. I would like to see something in the budget for next year where it would support the 11 staff members in all those colleges and work with the companies and IBEC to give those extra employment opportunities coming out of the college courses.

Article 28 of the UNCRPD recognises the right of persons to an adequate standard of living and social protection. Where are we doing right? Where are the gaps? What are we not doing? We are coming into budget. There was significant extra investment into the Department of children and disability last year. Where are the gaps still? I know there are lots of asks, but for budget 2027, where does the Government need to be identifying as a priority? Will the witnesses touch on those for me, please?

As I said, there are a lot of different priorities but across the board, it is for the cost of disability payment to be put in place. We welcome the work that is being done at the moment but there are fears about what might happen in the budget. Before we get to the budget, there is still a very strong call out from people with disabilities and organisations that a €400 emergency payment is put in place. While the sun might be shining, the bills are not going away and people are really struggling from the announcements at the last budget.

We are hearing in different areas that the disability sector was the winner last year. Those are the words being used about the budget, which is very concerning. It is also being said that might go against us this year because we had such an uplift last year. In that space, the uplift was in services, which was really needed and very much welcomed, but it must be remembered we were coming from a very low base to start off with so any kind of increment is sunk into the deficits that were there already.

The add on to that is that the uplift in services only impacts about 10% of the disability population. What we are looking for is for that uplift to be continued but we have to look at money in people's pockets so that they do not have to make those choices between eating and heating or whether they can charge up their motorised wheelchairs or hoists or whatever to be able to get out of their house and have some sort of an independent life. We have to make sure we are looking at both sides of how people with disabilities actually live their lives.

The other thing is the importance of getting a payment in place in this year’s budget that will recognise the cost of disability but also an uplift in the disability payments. There is about €112 difference between the disability payment and where a living wage is at. We are so far behind. There was a €10 uplift last year, which did not come anywhere near the rising costs of living let alone anything else. Those two things need to be brought into place in this year’s budget along with the €400 while we are waiting for budget 2027.

Ms Carthy made a comment at the beginning. As a member of a Government party, the sector was quite entitled to that and that is why the funding was put in place. More needs to be put in place. The word “winner” was in the media-----

It was not.

Comments like that should not be made by anybody in this House. A key priority for the Government is its strategy, which we are looking to implement. We are working with the various DPOs to make sure everyone gets the same chance in life. That is the way it should be. I am referring to a report produced by AsIAm when I use those words. That is key. Everyone is entitled to the same opportunities in life to maximise their potential, whatever that may be. It is not about winners; it is about giving everyone that same chance. As someone from a Government party, I want it known that is the conversation we have in our party when we are discussing disabilities. I know the commitment from the Minister of State, Deputy Higgins, and there is a commitment in the programme for Government regarding the cost of disability as well, so I want to put that on the record here.

On employment, I am working at the moment. You should not lose any of your benefits if you work extra hours. That is unfair. I would like to work more hours but I am afraid. There should not be any barrier. If you are on the medical card and on disability, that should not stop you from working. They should let you work away and hold onto that because your disability will not change. You will be the same for the rest of your life. I am visually impaired – nothing will change. My sight is gone and gone forever. I would like to contribute more but if I do that, I would lose out. There should not be a barrier. It should be just be that you can work 20 or 25 hours or however many hours you want. They should not stop or cut any payment or medical card. It should stay the same whether or not you are working.

I agree with my colleagues around the cost-of-disability payment. It is included in our own pre-budget submission. One thing is use of the word investment. That is a really important word because it is about investing in the lifecycle. Looking at the realities on the ground, like the in-school therapy programme which was mentioned earlier and the importance of that being rolled out to mitigate the cost to parents of having to pay for those additional therapeutic supports for their children or young autistic adolescents, by investing in those particular areas you are setting up individuals for the future to have that same chance in society. For example, of 130 special schools in the country, only a handful have guidance counsellors. That sends a very negative message for parents or guardians who have a child in a special school. We very much welcome the increase in and the expansion of the programmes with those colleges around the country for individuals with an intellectual disability. It is something I have a particular interest in, having a brother with an intellectual disability. A key priority for us is investing in those early-years supports for families, going back to therapeutic supports in particular. That is notwithstanding the cost-of-disability piece, which is very much a given.

I thank everyone for their opening statements. I listened to them all but then I had to run off. Apologies if I ask any questions, which have already been asked. This is such an important session. We know the cost of disability can be up to 60%. Ms Dunne spoke very clearly about the unintended consequences that can happen when people go into employment. They can lose their means-tested benefits. I would be interested to hear witnesses' ideas around whether those benefits should be kept and not be means tested. Should there be two years or 18 months of employment before being means tested? What are their opinions on that?

I also have a question on in-kind supports. I am Chair of the Joint Committee on Children and Equality. We have done a lot around child poverty and deprivation. There is also the intersectionality of disability as well. Our disabled community can often be even more at risk of poverty. We heard about the benefits of things like free hot school meals, clothing allocation and things like that. What do the witnesses think in relation to any in-kind supports that would be beneficial? That could be assistive technology, for example. I am thinking of disabled people in Mayo who have to get taxis to go to work because they do not have reliable transport. Would taxi vouchers or something like that be good?

We are probably all in agreement that the cost-of-disability payment should now be called the investment in disability payment. There was a summit with people anticipating this payment in advance of budget 2027. I heard there was quite a difference in opinion there around how to best achieve fairness and equity with this payment. Should it be a universal payment or should it be targeted based on the additional costs, recognising that disability costs can vary greatly by disability? I will open this to the floor. I have put a lot out there but I look forward to hearing the witnesses' opinions.

I thank Deputy Keogh for the questions. On the last question about the cost-of-disability payment, Ms Carthy mentioned earlier that a lot of disability organisations have come together and have said that initially the payment should be a universal rate of €55. We do not see the introduction of a cost-of-disability payment in this year’s budget will be the be all and end all. We would see it as being a starting point rather than an end point with 2027.

We would hope then that once the principle of a cost of disability payment was introduced, we would then be able to work through with the Government and the Department on how that payment would be rolled out in accordance with need - not looking at means, but at need. That is a co-design process that will take some time, and we accept that.

We talked about the importance of investing in people with disabilities and allowing them to live equally to others. That is hugely important for all the organisations here and for anybody who is advocating on behalf of people with disabilities. There is a very urgent need for the payment and that a start needs to be made.

Regarding the question on income disregards and the two or three years, we discussed earlier that for people who are going to live in fear of losing their benefits in three years, it is of no use to them to know that, if they get a job, they can only keep the benefits they need. One of the big obstacles to this is the income disregard. If you look at the progress that has been made on the income disregard with carers, there is a very stark difference there. The last increase we had in the income disregard for disability was 2023. We need to use the template done for the carers to say to people that they can keep their benefits, travel pass and medical card. The committee heard from Ms Dunne that these are the issues and challenges people are facing. The issue with the income disregard really needs to be dealt with in this year's budget.

I completely echo what Ms Carthy has said as regards setting up an additional cost of disability payment in this year's budget, but we would also see the cost of disability payment as being an ongoing process. It is about being informed by the lived experiences of disabled people actively engaged with DPOs, my colleagues and the wider disability community.

With regard to the eligibility criteria that was mentioned, one of the things we try to emphasise as a core principle of a cost of disability payment is that it does not reinforce or replicate barriers we might see that have been echoed throughout this hearing and which exist in the current system. We want the application process to be clearer and more straightforward.

We also see situations where, even in some of the feedback for the cost of disability, some of the criteria, language and framing used might inadvertently cause hardship or traumatise disabled people who are putting their own personal experiences forward when applying for supports. That reflects wider barriers within the application process itself.

As regards documentation and determining the amount, one of the things we wanted to try to ensure was how this would work in practice. With the cost of disability, it is about giving people the freedom to make these choices. When it comes to doing it, we would see it like a regular payment, but it would also be a situation where we would not want to see people having to reapply for individual, medical or personal expenses. We would advocate for a system that does not impose an additional administrative burden for disabled people and families.

Did Ms Carthy want to speak on that?

It is okay; it has been covered.

Did Mr. Lynott want to come in?

The Deputy mentioned benefits-in-kind or non-income supports, let us put it that way. One of the things I need to note and that I cannot stress enough is how important assistive technology is for getting into the workplace. I also need to make the committee aware that there are improvements as regards the provision of assistive technology in the workplace, in my experience, it is still not the maximum of what is available in universities. There is a dependence on what kind of employer you are involved with. If you are involved in the public sector, you have a much better chance of getting the assistance. If you are in the private sector, it is pretty much hit and miss. You have to deal with the cards you are dealt, as it were. There needs to be a way of consistently providing assistive technology that does not depend on the individual budgets of the organisations. I do not know how you do that, but it is about balance in what is available in the public and private sectors. Those are my thoughts on that.

That concludes round one, so I will briefly allow members to come back in if they want, but it will be only two minutes for questions and answers.

We are moving to the need for €55 per week, and perhaps, the €400 once-off emergency investment. Some of the witnesses might be aware that we previously discussed personalised budgets, because everybody's needs are different. Is that something our committee should be recommending to the HSE when HSE and Department of education budgets are laid out later in the year, that there are personalised budgets ring-fenced? I am coming back to the centralised disability fund Mr. Lynott mentioned, where each person has individual needs, but if you have your personal investment fund, that can be for technology. Do the witnesses wish to comment any further on how that can be developed and how we can move further on that? I see this as being in addition to the payments. I also thank the witnesses for the copy of the pre-budget submission they circulated.

On the personalised budgets, it is to get a good report out of the pilot to understand what worked there. Across the board, it is about looking at coming from a place of trust and trusting people with disabilities to be able to manage the problems that are there, but it would make it easier for people to be able to live their lives where they can make the choice of where the money is needed and where it could be spent. This gives that one-stop-shop so that people do not have to go to all sorts of different spaces, so personalised budgets are very important.

On the €55, and the fact that the Deputy - understandably - said that is what is needed, it is much more than €55 that is needed. That is important to keep in mind, but we feel €55 is very much a starting point to get it up.

I do not have much to add to what Ms Carthy has said, only to see what comes out of the report on personalised budgets. There would be a lot to recommend them as a way forward. I also want to emphasise again that we would see the €55 a week as a starting point and it would continue to be co-designed. We would also see it as a universal payment and not necessarily just applying to those on a disability payment, that people with disabilities in employment would also be entitled to some kind of tax credit, in acknowledgement of the fact they too have additional costs, even though they are working.

I will just echo what was said, and not take up time.

I did not get to Ms Carthy, Ms Dunne or Ms Costello in my first round of questions. I ask each of them to tell me briefly what can be done to entice more people with a disability into the workforce. For people already in the workforce, importantly, what can be done to encourage them to seek promotion?

The big piece for us is really the benefits side of things. It is about making sure that people do not end up worse off when taking up employment. Instead of giving a false sense of security, we need to make sure people can hold onto their benefits. We can do all sorts of programmes with employers, but really the big barrier is the benefits aspect.

They should talk to employers and explain to them the benefit of employing a person with a disability. The benefit should be spoken about rather than the barriers. It should be pointed out what a person can do for a company. It is about giving a sense of the benefits that people with disabilities bring to companies, rather than the barriers involved. It is about explaining what people can do.

Ms Dunne is talking about showing the good side.

Yes. It is about showing the good side and not the bad side of things. Do not highlight the disability but show the person’s ability and what they can do.

I think there could be a public awareness campaign too. I am thinking of someone with a disability who is employed and to do it from that perspective.

I have a disability and I am employed.

Yes. It is about showing it from the side of the employers and the employees.

I will again address the issue of retention of secondary benefits and looking at the earnings disregard. The wage subsidy scheme also needs further reform. A reduction to eight hours would be very progressive. That is important and easily done.

The rates of the wage subsidy scheme, WSS, should be linked to the national minimum wage. There are work path facilitators with the WSS as well. There is a grant of €30,000 for those facilitators, but it has not increased in 20 years. I am talking about those kinds of grants and in-work supports where there are job coaches.

We would also say that disability employment training, supports and supported employment to bring people into employment are greatly important. We have the lowest disability employment rate in the EU and we have the highest disability employment gap. Senator Clonan referred to this fact earlier. It behoves us to do something to try to help people to move into employment. That does not, though, fully resolve the issue around the cost of disability, and this must be acknowledged. People in work also incur the costs of disabilities.

I thank the witnesses.

The amount in respect of resolving the disability allowance situation was €112. There was then the sum of €55 per week and a universal payment. We have to get into universality. Obviously, the loss of benefits is a ridiculous obstacle for people.

Turning to the work and access programme for employers, I think the Minister himself would accept it is not fit for purpose. I will go back to Mr. Lynott in relation to assistive technology. This can revolutionise things, even if we are talking about an educational setting, and back up speech and language therapy supports. From the employer’s perspective, what has Mr. Lynott seen that has been easy enough to access in the public sector that has not been there? Making the scheme better for the employer so it is better for the employee is the big thing. It is about ensuring that whatever is necessary can be provided.

Is that directed to Mr. Lynott?

It is. The work and access programme is about putting reasonable accommodations in place. Mr. Lynott spoke about the fact that he has seen very good reasonable accommodations in respect of assistive technology in the public sector.

In relation to the work and access grant, I looked at it in relation to the funding and the criteria. One of the things about the work and access grant is that, as far as I understand, it is not available for people in the Civil Service. According to my understanding, it is primarily available for people in the private sector. That does not make sense to me. It should be available regardless of where people work. There should not be a criterion in that regard. The point is that I think the full fund is set at €12,000 or something like that. When we think about the title of the scheme, which is "work and access", a whole lot of different things are needed to access work, and €12,000 a year is certainly not going to be enough to cover all those different costs.

I mentioned independent living supports. If we look at most types of healthcare companies or independent living supports, most people are looking for wages of €12 to €16 per hour for independent living support staff. For 52 weeks a year, then, we are talking about an astronomical amount of money by the end of the year. This is why independent living supports seem a very disproportionate burden. It is because of the amount of money involved.

To go back to my original point, the criteria in respect of the work and access programme do not make sense. The funding is also not enough to cover all the needs required to access work.

I thank Mr. Lynott. Does Deputy Healy wish to contribute briefly?

Access to personal assistance is very important for independent living and for access to employment. What is the picture like out there in this regard? Is there ready access to personal assistance? Are there long delays, are they available or what is the situation?

There are major problems when it comes to personal assistance. It comes in at all sorts of different levels. Initially, it is in relation to workforce planning, and trying to get people to take up employment. There is an issue around pay parity. People are not getting paid the same if they work for a section 39 organisation as they would if they were working for the HSE. Our personal assistance services are being forced into an authorisation scheme.

On the ground, as well, if someone goes looking for a personal assistant, people in a lot of regions are being told straight out that only home care packages are provided and not personal assistants. This means that people will have someone to help them to get up in the morning and back to bed in the evening, but those are the only hours being granted. Nothing is provided during the day if people want to take part in employment, education, social life, family life or whatever it might be. No hours are being made available for those activities. While the Government is saying that it is putting money into this area, and that there are hours available, it is not happening for personal assistance services on the ground.

I thank Ms Carthy.

That nearly concludes our discussion today. Mr. Carroll would like to make a quick point.

Very quickly, one of the things we wanted to talk about in terms of the work and access scheme, speaking to a point already made, is that we would like to see a review of how it is working and what we can do to improve access to it. This would be building on all the points we discussed this morning.

The other point worth mentioning, speaking from the employer’s perspective, is disclosure. It is a big issue for many people looking to access supports in the workplace. It is about having a conversation with an employer concerning the supports they might need at work. It is a conversation that can be very uncomfortable or taboo. Even in terms of training, the need around awareness-raising was mentioned. This concerns the work and access scheme and also supporting more disabled people to get into work. There needs to be an emphasis on supporting employers to create more psychologically safe environments to support disabled people and enable them to have those conversations.

It is particularly the case for the communities represented here, but also in terms of mental health. That falls within the disability family. In the context of disability and neurodivergence, those are the kinds of conversations where a person might have to go up to an employer and say that they might need supports for further access. They need to be confident that they will be listened to and that employers will be able to provide supports as they need them.

On the final point, the Disability Act review is a really good opportunity for us to have a look at reasonable accommodations in the workplace. There is a conversation to be had in that regard. What we would like to see is for us to be brought into line with the EU and the UNCRPD in the context of having the relevant standards around ensuring that a disproportionate portion burden in the context of those standards does not pose additional barriers for disabled people to access the supports they need.

I thank the witnesses for coming. I particularly thank them for submitting their opening statements in advance in order to assist us with our deliberations. The committee will now go into private session to deal with a number of housekeeping matters. Is that agreed? Agreed.