Maurice Quinlivan (Limerick City, Sinn Fein)
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Apologies have been received from Senator Bradley and Deputy Carrigy. The purpose of today's meeting is to discuss living independently in the community for persons with disabilities. On behalf of the committee, I extend a warm welcome to the following: from Disability Federation of Ireland, Dr. Emer Begley, director of advocacy, Mr. Brian Dalton, member, and Mr. Michael Doyle, member; and from Leap Ireland, Ms Rachel Cassen, director.

Before we begin, I draw attention to the issue of privilege and some housekeeping matters. All witnesses are reminded of the long-standing parliamentary practice to the effect that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore, if their statements are potentially defamatory in relation to an identifiable person or entity they will be directed to discontinue their remarks and it is imperative that they comply with any such direction. The evidence of witnesses physically present or those 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 of the committee attending remotely must do so from within the precincts of Leinster House.

I invite Dr. Begley of the Disability Federation of Ireland to make her opening statement.

Dr. Emer Begley:

I thank the Cathaoirleach and members of the committee for the invitation to appear today. I am joined by Mr. Michael Doyle, director of assisted living services with one of our member organisations, the Irish Wheelchair Association, and also by Mr. Brian Dalton, who is on the board of ChildVision and the Irish National Braille and Alternative Formats Authority. Both are members of DFI. Our opening statement was developed from a policy position DFI published last year with our personal assistance advisory group and with input from Mr. Doyle and Mr. Dalton. DFI is a civil society and pan-disability federation of over 100 members working at national, regional and local levels. Our aim is to support implementation of the United Nations Convention on the Rights of People with Disabilities, UNCRPD. I will speak to two foundational elements of independent living in the community this morning, namely, personal assistance services and personalised budgets.

Article 19 of the UN Convention states the right of disabled people to access “... community support services, including personal assistance, PA, necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community”. Importantly, the article outlines the rights of disabled people to access education and employment as well as to actively participate in their communities however they choose on an equal basis with others. Historically, PA services have evolved without a stated Government policy position in Ireland and without an acknowledged statutory, inalienable right to independent living as enshrined in the convention. In part, this has contributed to limited expansion of PA services and exacerbated inequity of access, leading also to conflation of PA services with other disability supports such as home care services. However, they are fundamentally different.

Disabled people, often referred to as leaders within a PA service, choose and direct their PA. PAs provide person-to-person assistance for a range of daily activities both inside and outside the home. This remains at the discretion and direction of the disabled person. Administrative functions for a PA service can be undertaken by a PA but also by a service provider, such as the Irish Wheelchair Association or one of the many centres for independent living and other voluntary organisations that work across the country. It is fundamental that the ethos and values of the PA service model are upheld in future policies and practices. There are significant commitments in the recently published national human rights strategy for disabled people to deliver 1 million additional PA hours by 2030. To achieve this target, several actions are required, including making the work of the HSE’s PA review group a priority as it is tasked to develop an agreed definition and model for PA, providing recommendations for legislative and policy changes and a roadmap for the improvement and enhancement on an equitable national basis. It needs workforce planning to address recruitment and retention of skilled PAs with pay alignment assured and legislation for the right to a personal assistant.

To turn to personalised budgets, sometimes called personal budgets or individualised budgets, this refers to specific funding allocated following an assessment of need which the individual can then use to arrange and pay for the supports and services that best meet their individual goals and preferences. Personalised budgets can provide greater choice, control, flexibility and autonomy to the individual to self-direct their support and care. It enables people to live independently, participate in the community and exercise their rights under the convention. Personalised budgets are frequently considered alongside PA services, however the two are not necessarily linked. In a holistic model, there is potential for personal budgets to fund other activities and interventions such as transport, training, therapies, sport, mileage for PAs and access to other community supports, for instance. There has been limited implementation of personalised budgets in Ireland to date. A pilot initiative developed and run by the HSE is currently under review by the National Disability Authority. Its report is expected in quarter 1 next year. It is our view that the model which exists in Ireland has limitations. There is a considerable administrative and human resource burden for the individual if they are managing their own budget, co-ordinating their support and financially managing invoices and payments as well as being an employer and all that entails. In addition, inconsistencies have been identified with personal budgets across regions. They lacked flexibility and standardisation of approach. We know that expanded delivery, increased flexibility and choice are key components which can maximise the impact of personalised budgets. There are multiple examples of workable models from other areas that can inform further development. It is our view that personalised budgets need real commitment with an agreed model and delivery for them to maximise impact. We are happy to expand on any of these points and to answer any questions.

Ms Rachel Cassen:

I thank the Cathaoirleach and members of the committee. I am the director of Leap Ireland, an organisation formed to assist families of children with disabilities to take action for an inclusive life. Drawing upon nearly two decades of Irish policy commitments, international evidence and the lived experience of families supported by Leap, I am speaking to implore the Government to urgently scale up individualised funding or personal budgets as a core mechanism for delivering disability supports and enabling inclusion.

When we ask the question what works and what is worth investing in to ensure children and young people with disabilities achieve inclusive lives, we see that some of the fundamental enablers of good lives over the life course are inclusive education, employment and access to individualised funding. To support full and effective participation of children and young people with disabilities, investment should focus on resourcing children and families to stay on an inclusive life path. Parental expectations play a crucial role in shaping post-school outcomes for young people with disabilities, so work to foster a shift in mindset is essential, as is providing financial resources to families to keep children included in ordinary community life. Families need to be supported to envision and plan for an ordinary, typical life.

To support this, funding needs to move away from institutionalised services and towards the creation of community-based roles such as inclusion facilitators to work with families of young children to support their child’s inclusion in ordinary community life. Leap’s work with families highlights that true inclusion is only possible when children and adults with disabilities are supported to live ordinary lives in ordinary places. Despite Ireland’s ratification of the UNCRPD in 2018, current policies and funding structures continue to reinforce institutional models, particularly in education, employment and disability support services. Critical enablers of inclusive lives such as individualised funding, inclusive education and access to open employment remain largely underdeveloped or inaccessible to people with disabilities.

Since Leap’s inception in 2012, we have advocated for key reforms, including the introduction of individualised funding, which is a key factor in enabling meaningful lives for people with disabilities. When combined with the vision of an ordinary life, individualised funding can be transformative in helping people with disabilities to lead inclusive lives in their communities. Individualised funding available to children and adults enables fundamental elements of an inclusive life, namely, an inclusive education and open employment. Without these two elements being present, people with disabilities risk marginalisation and can find it very hard to access valued roles in society. As such, they become exposed to the risks of marginalisation, isolation, social exclusion and endemic poverty. Individualised funding when paired with a vision of an inclusive life can produce life-changing outcomes.

These outcomes are incompatible with traditional congregated service models of disability services where funding is block granted to service providers and leads to poor social, educational, and economic outcomes for disabled people. These institutional models reinforce dependency and fail to support meaningful community participation. In contrast, participants in individualised funding pilots report increased independence, confidence, skill-building and community integration. The best way to achieve these outcomes is to shift funding to the individual in the form of individualised funding coupled with community-based supports to pursue these goals. Giving people individualised funding and then abandoning them to their own resources does not work either.

In October 2016, the then Minister of State with responsibility for disability established a task force to make recommendations on a personalised budgets model, which would give people with disabilities more control in accessing personal social services.

Maurice Quinlivan (Limerick City, Sinn Fein)
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Ms Cassen should conclude her comments.

Ms Rachel Cassen:

As we are all aware, the demonstration pilot project on personalised budgets has floundered due to lack of resources and Covid. The evaluation may show quite poor results. We urge this committee, however, to recommend that legislation be developed to establish a right to individualised funding for children and adults eligible for disability support. We have written to the CRPD to this effect through the list of issues. I will make further comments when invited.

Maurice Quinlivan (Limerick City, Sinn Fein)
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The rest of Ms Cassen's statement will be put on our record. I thank her for her contribution.

Ruairí Ó Murchú (Louth, Sinn Fein)
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I was listening to the witnesses before I came in here. It is a repeat of a conversation we have had many times before regarding what is required. We are talking about how we allow or facilitate people to be the best they can be and to have full lives. When we talk about independent living, there is often a significant impact on families and nobody knows what the future holds. It is making sure we put in the funding and the resources at an early stage so we allow people to be part of society in all its parts, including education,employment and so on.

The witnesses have already laid it out in the sense that the biggest things we are talking about are personalised budgets combined with services and resources that required, ensuring that school is the place it should be and fitting everything in. The witnesses have already said that legislation on a right to personalised budgets is needed so there is no wriggle room regarding being able to provide a system that works. What are the main aspects we need to see this through? We know the conversation is happening across the board regarding disability and the added cost for people with disabilities and their families and the lack of a cost of disability payment. There is the promise of one in the future but it is an issue that needs to be put in front of the Government at this time.

Dr. Emer Begley:

For the DFI, one of the key things is the legislative underpinning for personal assistance services as a foundational piece of community and independent living and not conflating it with home supports, as I mentioned. I will defer to my two colleagues to answer the Deputy's questions. Perhaps Mr. Dalton could speak to personalised budgeting in particular.

Mr. Brian Dalton:

When I began my personal assistance journey in 2013, I spent three years on a waiting list to get a personal assistant. I am totally blind and a wheelchair user. The reason I got some hours, which was a small number of hours at the time, was because somebody died. A disabled person died and his or her hours were divvied up. I began my personal assistance journey with a service provider in the Irish Wheelchair Association and was guided and supported. The true aim for me was to reach the personalised budgets project where I had full flexibility, full choice and full control in my own life so I could hire the people I wanted to work with and could hire the people who I deemed appropriate to have the same skill set I was looking for. There have been several challenges with regard to that around recruitment. In my last advertising campaign, I had about 300 applicants and about three people I would deem to have been suitable for it.

I entered the personalised budgets programme in 2024. Since then, the staff membership has been reduced by two and is almost non-existent. I have been informed that the current staff member on the personalised budgets has not even been given a full week to work on his programme. There are challenges for me as an employer in terms of getting invoices through systems. While I understand that transparency is required, the system does not meet the user need in terms of the administration. I have had to send in several invoices ahead of time to have them published because I cannot say to my personal assistants at the end of the month that I am sorry but I have no money to pay them because they will say "see you around Brian". We cannot have that.

The fundamental thing to understand about a personal assistant is that one builds a relationship with him or her in one's life. These are people I have chosen to work with me. I have two full-time personal assistants and one lady who provides relief cover to cover annual leave and various gaps. One builds a relationship with these people. They are part of one's life. My own company is called My Life My Way because that is essentially what a personal assistant means to me. Being part of the personalised budgets means that I can set the terms and conditions. I can set the salary that my budget can afford. I can agree terms and conditions with my personal assistant.

My funding for the personalised budgets comes from the HSE, yet my personal assistants do not have the same terms and conditions as HSE workers. I am talking about issues such as pay alignment, terms and benefits. I have three female personal assistants, PAs. If any of those goes out on maternity leave, I cannot give her the benefits that she may get if she had the same terms and conditions as HSE workers. I hope that goes some way to answer the questions around the challenges.

Ruairí Ó Murchú (Louth, Sinn Fein)
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Absolutely. It looks like a system that needs to be streamlined. Obviously, Mr. Dalton has a significant amount of capacity to do this. I imagine it is difficult for people to become employers with all that is involved in relation to it.

Mr. Brian Dalton:

The benefits would be enormous, if it was done properly. For example, one of the things that my personal assistants will do for me is they will drive, because I do not see. I will not drive a car anytime soon.

Ruairí Ó Murchú (Louth, Sinn Fein)
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They are supports that Mr. Dalton requires.

Mr. Brian Dalton:

They are.

Dr. Emer Begley:

Personalised budgeting would pay for the fuel in the car as well.

Mr. Michael Doyle:

I will add to what Mr. Dalton has said. He has talked about his personal experience of personalised budgets. It is a challenge for anyone to take it on because of the bureaucracy involved with it. Our vision of a personalised budget is not really what is being seen at the moment as uplifting services that people are receiving and looking for them to manage themselves within a framework. That is not a personalised budget model as recognised internationally, where I should have an holistic approach that would have support for the individual to do activities and to live their life the same as anyone else.

In relation to the PA service, a PA service is a personalised budget with support in place. It is about supporting a person through their life through what they need at a point in time. People who receive PA services are not ill. They are not people who are unwell. They are people who need support to live independently to do the activities that everyone in this room, on that side of the table, takes for granted. That is what we need to look at. This is a service to enable people to participate in society, to participate in employment or in education, to be part of the community and to be a contributor to society. That is the model of a PA, and whether it is through a PA model or a supported budget model, it is what we are trying to achieve through the legislation the Disability Federation of Ireland, DFI, is working towards putting in place and through a full recognition of the real value of a PA service. It is not a home support service. It is not keeping somebody safe in their home for a period of time and making sure they are okay. It is about allowing them to live their lives in their communities.

Ruairí Ó Murchú (Louth, Sinn Fein)
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What are needed are a better system and a real needs analysis to see what we need to provide for people.

Maurice Quinlivan (Limerick City, Sinn Fein)
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The Deputy's time is up. We will move on to the Social Democrats. I call on Deputy Quaide.

Liam Quaide (Cork East, Social Democrats)
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I thank the witnesses for being here today. First, I acknowledge the work of Senator Clonan in this area of personalised budgets and how much this relates to affording autonomy to disabled citizens and how important that is.

I wonder if the witnesses could give me a sense of how personalised budgets are worked out in practice, how much variability there might be from one person to the next in the budget allocated, what level of assessment is required to establish the budget that a person needs and how we can ensure that assessment process is not overly bureaucratic.

Dr. Emer Begley:

There are very small numbers on personalised budgets and using the personalised budget model in Ireland. The National Disability Authority review concerns a very limited number of people. It is either a self-managed budget or one that is co-managed budget with the HSE. I might defer to Mr. Dalton, who has gone through the process.

Mr. Brian Dalton:

What you would do is a needs assessment where you would list out the various tasks that you require support in your life with. They would all have to be listed out, categorised and itemised and then you would send that to your disability manager within the HSE and that would be reviewed to assess the budget that you get.

Liam Quaide (Cork East, Social Democrats)
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Do the witnesses have comments on that process here as compared with countries that are doing personalised budgets well? Do they have an example of international best practice?

Dr. Emer Begley:

I might come in on that.

Mr. Brian Dalton:

Sure.

Dr. Emer Begley:

We were involved a project, called UNIC, that published its final reports a couple of years ago. It looked at personalised budgeting across European countries. There are models in other countries, for instance, in The Netherlands. In Flanders specifically, all community disability supports are through a personalised budgeting model. It is not perfect. They transitioned to that model in 2017 and it happened too quickly. They have a cash or voucher system. They have an agency that manages it all. It sits separately from service provision. They undertake the needs assessment. In the first year, they support co-ordination of services and supports and they can look after financial management. It is not perfect because there are delays with reassessment when need changes and there are long waiting lists for that. In Germany, they have a personalised budget system. That is based on individual needs. It can be used not only for PA but for mobility, rehabilitation and housing-related supports that promote participation and independent living. It is, as Deputy Ó Murchú said, connected to the cost of disability. As Mr. Doyle said, it is in addition to existing services. In the Netherlands, it is not in addition to existing services; it is the funding model that supports delivery.

Liam Quaide (Cork East, Social Democrats)
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What is the main political barrier or barriers to a proper implementation of personalised budgets here?

Dr. Emer Begley:

Maybe Ms Cassen can speak to this. I do not think we have ever had a workable model in Ireland. There was a very small pilot project that ran on for quite a long time. There were issues with the review. The review was massively delayed. It is happening now, but there are very small numbers participating in it. We question the value of the outcomes. We will wait to see from that. It seems that everything is stalled until we have evidence in Ireland on effectiveness. It needs real will and leadership around it.

Ms Rachel Cassen:

In some countries around the world, personal budgets have been in place for up to 30 years, for example, some states in America and provinces in Canada. In those countries, it is found that up to 30% will opt for a personalised budget when offered one if it has light-touch bureaucracy around it. We are not expecting that everybody will go for this but for those who do, it fits like a glove and is transformative and enabling in terms of their inclusion in ordinary community life, which is the goal.

Sometimes it seems to me that we look at personal budgets through a different lens than congregated disability services, which are showing poor outcomes for the longest time and spend huge amounts of money. The young people and families we work with do not want to go into what we call day-wasting services. They do not want that. Why should they accept segregation because one aspect of their identity is an impairment? We would not do it for any other group in society, so why do we continue to congregate and segregate young people with disabilities when they leave school?

A personal budget is a small parcel of money. By the way, in the aggregate, personal budgets have been proved in all countries that have them to be more cost effective. There will be outliers. There will be individuals who need a lot of funding - individuals who would otherwise perhaps have been placed into nursing homes - but in the aggregate, personal budgets are more cost effective. It is like your own family household budget in that when you are in control of that budget, you spend it wisely and well.

Liam Quaide (Cork East, Social Democrats)
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It seems that a lot of political change that needs to happen in this country, in the area of disability and probably in all areas, often falls foul of a kind of disjointedness between Departments or agencies and maybe a lack of integration that is needed to drive something forward. Can the witnesses give a sense of the cross-departmental work that needs to happen to ensure that personalised budgets are pursued and implemented and that we do not have years of delay and review? What needs to happen between the Department of social protection and other Departments?

Ms Rachel Cassen:

Good information needs to be circulated as a starting point. We need an absolute shift in mindset away from the charity mindset, that is, the idea that the highest order need of people with disabilities is to be cared for.

We need to stop thinking like that and realise people with disabilities want exactly what we want. In tandem, we need to stop developing segregated education. Segregated education is really growing in this country, particularly for children and young people with autism. We have not yet looked at the outcomes but we believe in Leap that they will be very poor in terms of young people having the self-confidence and self-concept to progress to education, training or employment. Segregation is doing great damage, in our opinion.

Personal budgets on their own are not a panacea. We have to consider how we are segregating people with disabilities and treating them differently from childhood on. It is a matter of regarding families as the third leg of the stool. They get very little attention. We must encourage families, and that is why I talk about the word “vision”, dreaming big and aiming high. In North America, parental expectations are known to be an absolute game-changer in terms of outcomes for people with disabilities.

Laura Harmon (Labour)
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I thank everyone for being here today and for their insightful contributions. As was mentioned, we need a sea change in how we deal with this issue and include disabled people in Ireland in general, be it in the education system or the workforce and through financial supports. The most recent budget was a missed opportunity to introduce a cost-of-disability payment. We now have the new Government strategy on human rights for disabled people, and that has been welcomed cautiously by many organisations in Ireland. We really need to see it implemented, not sitting on a shelf. It is relatively ambitious and it is welcome but it needs to be implemented.

I commend Senator Tom Clonan on all his work and advocacy in this area.

How could personalised budgets be promoted better? Do training seminars need to happen? How could the concept be promoted in the community?

I have a follow-up question, for Leap. It mentioned inclusion facilitators in community roles to ensure disabled people are accounted for in everyday life. How would Leap like to see this happen in reality? What would that look like as a good model?

Ms Rachel Cassen:

We persistently underfunded inclusive community-based supports. We offer little or no funding to DPOs and family-led organisations like ourselves that support families to pursue an inclusive life. It would be great for those organisations to have new roles, such as inclusion facilitators. Inclusion is an art, not a science, and the further you come away from the inclusive life path, the harder it is to come out of segregation, having been othered.

On the question on how we set up personal budgets in a robust, sustainable way, we need a particular base for personalised budgets, as Finian McGrath had in his vision when he set up the task force for personal budgets. We need a fully resourced staff and maybe a building or office spaces. We need to start advertising on the radio and television what is available to people. We need to be really positive, sharing stories. Stories are really powerful. We have many stories of young people. We work only with children and young adults, so that is why I am always talking about them. They have achieved so much with a small parcel of money that they self-direct. Those are my recommendations.

Mr. Brian Dalton:

Disabled people need to be at the heart of this. The political leaders need to be driving this system. To go back to a point we made earlier, the distinction between home care and a personal assistant is massive, and that is not understood by the wider world or wider community. A PA acts for me as my eyes, arms and legs. That is effectively what a PA is. I decide what I would like to do and when I would like to do it. I provide the direction and the PA carries out the physical actions as per my instructions. They would help me in all aspects of life inside my home to enable me to be a dad to my two children, do my work, hold down a full-time job, play a part in my community and engage in various social activities. A campaign needs to be run on what PAs do and the important role they play in allowing disabled people to live independently so they are not trapped in nursing homes and in their own homes. The campaign needs to highlight that they can play a genuine part in society if the right support is available. When I send out advertisements for jobs and refer to a PA, most people think I am referring to an office worker. They do not understand what the role is. It is a unique role. Once I explain to people what it is, there is a lot of interest in it. We need to capture that emotion and interest and use it to the advantage of building an inclusive system.

Dr. Emer Begley:

In 2024, 2,780 people in Ireland were in receipt of a PA service. This is a very small number. The potential for the expansion of PA services is huge, but without a national policy or legislation on the right to a PA, things will be extremely difficult. It is really difficult to retain and recruit PAs. As Mr. Dalton said, people do not know what a PA does. It is not a valued role and there is no pay alignment. Mr. Doyle can speak about the IWA’s experience in that regard.

Mr. Michael Doyle:

I will pick up on Mr. Dalton’s point and come back to pay alignment in a minute. Senator Harmon asked about what we need to do to promote it. We need to have a clear distinction. It is not just about a continuation of the service people receive through an organisation or the State. It is about an uplift on that. There is an investment, which Mr. Dalton has outlined, in respect of taking this on as a role, as a leader to manage your own budget. Another piece of your life is given over to managing it, so there has to be a reward and there have to be supports. It also has to be recognised that at a point in time a person’s needs may change, so there has to be flexibility. I do not think that there is a full understanding of the value that a PA service can bring to the community and individual receiving it.

On pay alignment, we are, as the committee will be aware, engaged with the WRC on bringing the pay of staff who provide valuable services into line with what the HSE pays for similar work, and sometimes work that is less than similar. Staff we employ, recruited and trained by Mr. Dalton, become very valuable commodities for other providers, including private providers and the HSE, so we need to close the gap. I am referring to a career for people. This is not something that people do to fill time. There was a time when PAs were people who had a few hours available to them but PAs are now people who take on the role to offer support. Mr. Dalton will have a team supporting him almost 24-7. The role is a big commitment. We want to build personal assistance as a career and people to see the value of what they bring to it. That is not seen at the moment in recruitment numbers. We are not seeing people leaving school saying this is what they want to do. We need to help them and educate them on it.

Maurice Quinlivan (Limerick City, Sinn Fein)
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That concludes Senator Harmon’s slot. How many people did Ms Dr. Begley say have a PA service?

Dr. Emer Begley:

Two thousand seven hundred and eighty.

Maurice Quinlivan (Limerick City, Sinn Fein)
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I thank Dr Begley.

Margaret Murphy O'Mahony (Fianna Fail)
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I thank all the witnesses for coming in here today and for the fantastic work they do. Most of my questions were actually centred around the personalised budgets and the personal assistance systems, but to be fair to the witnesses, they have covered them very well. I acknowledge the fantastic work done in this field by our colleague Senator Clonan. Well done to him.

I love the title "Independent Living in the Community". We often talk about independent living but it is important for it to be independent living while being part of the community.

I just wanted to reference the title.

My question is to the DFI and Dr. Begley, Mr. Doyle and Mr. Dalton. The cost of having a disability can prevent independent living in the community. Figures show that if you have a disability, it costs more to live. What specific measures should the Government prioritise to prevent poverty among those who have a disability?

Dr. Emer Begley:

The cost of disability has been a priority policy area of the DFI for many years. We have been calling for a cost-of-disability payment since 2007. We have the evidence from the Indecon report that the additional cost of having a disability is between €9,000 and €12,000 annually, and that is old data. Fundamentally, we think there should be a cost-of-disability payment. In our pre-budget submission, we called for a €55 weekly payment. That would not meet the additional costs but it would go some way in supporting people to live an independent life.

Alongside that, enhancement of community supports is needed, so that people are not having to pay for things like transport because there is no accessible transport in their region, and that people do not have to pay privately for therapies because they do not have a medical card. People who are working do not retain a medical card after five years, for instance, if their means are over a certain amount. A medical card based on need and a travel pass for those who have a disability are two foundational pieces of this, along with a cost-of-disability payment. Enhanced community supports, personalised budgeting and personal assistant services should all go hand in hand. That is in addition to looking at housing.

Deputy Quaide spoke about interdepartmental working. It is never going to be one Department's area; it is across Departments.

Margaret Murphy O'Mahony (Fianna Fail)
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They have to work together.

Dr. Emer Begley:

Who is going to take leadership and push this forward? For us, the loss of the once-off payments with no targeted measures for disabled people in budget 2026 is massive for people. It will result in a loss of between €1,200 and €1,400 per annum for some people. That is huge for people.

Margaret Murphy O'Mahony (Fianna Fail)
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I met with the DFI and I remember it highlighted that.

Dr. Emer Begley:

Yes.

Margaret Murphy O'Mahony (Fianna Fail)
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They were once-off payments but they were part of someone's life last year so I can see that their being taken away had a big effect. I thank Dr. Begley for that.

Ms Cassen stressed the importance of mainstream education. Will she expand on that? What are the biggest barriers to families securing mainstream inclusive education?

Ms Rachel Cassen:

The attitude of schools is the biggest barrier, as is the belief, which nobody is ever going to admit so it is a very difficult thing to challenge, that children with disabilities should be in a separate setting. For example, we have spent a lot of time with an organisation called Inclusion Alberta, in Canada, which set up what is called "Inclusive Post-Secondary Education". Some 80% of students achieving an inclusive post-secondary education go on to open employment. The question for me is always what we are educating our children for, and this even links into the cost-of-disability payment. Part of the thinking about that payment comes out of an idea that people with disabilities are jobless and that jobless is their lot. We need to have far greater ambition for young people with disabilities today to think they will work.

Another project we work with in Washington State, not Washington DC, called the Rise Project, has 80% of people with disabilities in open employment. The reason is that it decided this was possible and set its expectations very high. It provided the right types of supports and included people with what is often described as "challenging behaviour". The project has managed to place them and has looked at the conditions of success in the person showing up well, in the right environment, with the right supports. Again, I encourage us all to think differently about what we are looking at and talking about when we discuss disability. People are going to be poor if they spend their whole lives not working. Let us get them working.

With the massive rise of AI, we need to get on top of this in terms of the impact of AI on the employment of people with disabilities. Many entry level jobs are being wiped out. Many new jobs will come in but, as yet, we do not know what they are. AI is going to change things for people with disabilities seeking work because some of the jobs that, traditionally, they might have sought are gone.

Margaret Murphy O'Mahony (Fianna Fail)
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That is a good point and one I had not thought of. How would Ms Cassen suggest that be done? Should it be through research?

Ms Rachel Cassen:

I do not know. We need a good group of individuals who understand AI and the world of work to come together and focus on that because AI is galloping now.

Margaret Murphy O'Mahony (Fianna Fail)
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It is frightening.

Ms Rachel Cassen:

For people with disabilities, who are already extremely disadvantaged in the workplace, the supports that exist are becoming very dated. We need to urgently address that. As everybody in this room knows, in the past ten years, Ireland has fallen off a cliff in terms of employment outcomes for people with disabilities. Doing more of what we have always done is no longer good enough.

Tom Clonan (Independent)
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I thank everyone for coming. In particular, I thank Mr. Dalton for sharing his experience. It is difficult when we have to retell our stories over and over again. I thank Ms Cassen for her contribution. I was particularly struck by several things she said but especially that one aspect of a person's identity is an impairment and that should not exclude him or her from full inclusion and participation in society. Everything she said about ambition and the international examples she gave were great to hear. I thank her for her advocacy.

How many members does the DFI have?

Dr. Emer Begley:

There are 106 members.

Tom Clonan (Independent)
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On 25 June, I introduced the Disability (Personalised Budgets) Bill 2024. It is a very comprehensive Bill which deals with all the issues the witnesses raised. Does DFI support that Bill?

Dr. Emer Begley:

We would support it.

Tom Clonan (Independent)
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It would support it. Has the organisation communicated information about that Bill to its 100 or so members?

Dr. Emer Begley:

I would have to talk to our communications manager about that. We are very supportive of legislation in this area.

Tom Clonan (Independent)
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I need that support. The DFI is comprehensively funded by the State to represent the interests of our community and here is the legislation that addresses all the issues it has been raising today. It is very comprehensive legislation.

I would also very much like to meet the DFI's new chief executive. I have written to the organisation requesting such a meeting and I have had no response or acknowledgement.

Maurice Quinlivan (Limerick City, Sinn Fein)
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Sorry, Senator, but that is a very different discussion.

Tom Clonan (Independent)
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It is all part of the same conversation. I am just curious. Does the Irish Wheelchair Association support personalised budgets?

Mr. Michael Doyle:

Absolutely, and we were part of the AT network. We full support anything that can give a person some choice or control. Mr. Dalton will not mind me saying that he was part of that.

Tom Clonan (Independent)
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Has the organisation communicated that to its membership?

Mr. Michael Doyle:

As part of the AT network and the roll-out of the personalised budget, we worked with the Minister of State at the time, Finian McGrath, communicating that and looking for people to participate in the pilot.

Tom Clonan (Independent)
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This legislation was introduced on 25 June.

Dr. Begley pointed out that, unfortunately, and I have had this experience myself with CHO managers in the different CHOs who are very idiosyncratic and capricious, some of them do not believe in PAs, just as people do not believe in Santa Claus or the Easter Bunny. The reason they can say such things to applicants and people like us is that we do not have in legislation the socioeconomic rights that are in place in every other jurisdiction in the EU. We are 30 years behind Britain - England, Scotland, Wales and Northern Ireland - and 50 years behind Germany.

I introduced legislation - the Disability (Miscellaneous Provisions) Bill 2023 - to provide those socioeconomic rights. The Bill will be considered on Report and Final Stages next week, on 26 November. It is unusual for an Opposition Bill to go through all Stages even though the Government opposes it, but I will bring it to its Final Stage next week. It seeks to remedy that defect. If enacted, it will give disabled citizens and carers the socioeconomic rights to move from a charity-based model to a fundamental human rights model. Does the Disability Federation of Ireland support that Bill?

Dr. Emer Begley:

We would support a Bill that moves to a rights-based model.

Tom Clonan (Independent)
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Has the federation communicated to its 101 members anything about this Bill?

Dr. Emer Begley:

I am not informed enough to answer the Senator directly in terms of a formal request that went to our CEO or a formal request for us to disseminate it to our members. I am not in a position to answer that.

Tom Clonan (Independent)
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My understanding of an advocacy group is that it lobbies politicians. Or is it that politicians are supposed to lobby advocacy groups?

Dr. Emer Begley:

Not at all, no.

Tom Clonan (Independent)
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That is not my understanding of the social contract. We have a huge, powerful community of disabled citizens and carers. In my experience, the principal challenge is fragmentation. Apart from communicating with the federation, which is not my role, I am at a loss to know how I can mobilise its support. Can the federation perhaps outline to me the ways in which it can assist me in communicating what I am doing here to our broader community through its membership of 101 organisations. What steps can it take?

Dr. Emer Begley:

I will very happily meet with the Senator to talk to him about it and to get the information that we can share with our members.

Tom Clonan (Independent)
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In advance of such a meeting with Dr. Begley or the CEO, what steps can the DFI take to communicate what we are trying to do here for disabled citizens?

Dr. Emer Begley:

A lot of what we do with our members is peer networking, where we bring our members together to support each other in sharing information. If there are campaigns, they support each other around them. The Senator is right; the sector is very fragmented. There is a dichotomy between what are perceived as service providers and as non-service providers or DPOs. We are a broad ecosystem. It is about how you bring everybody together where they are not pitted one against the other and where there is a common goal. That is where things have fallen down a bit. It is either you are in this camp or that camp, when, actually the majority of people have a personal experience.

Tom Clonan (Independent)
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I have one final question. Before I ask that, the DFI has conferences, newsletters, a website and all of that.

Dr. Emer Begley:

It does.

Tom Clonan (Independent)
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I ask the DFI to please include my legislative programme.

In my experience, from the hundreds and hundreds of representations I make on behalf of disabled citizens, CHOs are completely and utterly independent of one another and do not have a uniform approach. Some of them approve a personal budget and some of them do not. What outreach is DFI doing to the HSE to remedy that?

Dr. Emer Begley:

A huge amount of our advocacy representative work is with the HSE or members of the national consultative committee at the HSE centre. There are regional disability consultative structures. We have members on that. We have an internal advisory group structure where we share the information. The fragmentation is massive within the HSE where decisions are made more on a personal, subjective view, and there is a huge lack of equity across the country because it is a geographical lottery based on where you live. It is huge. Without a national model, you are leaving interpretations at a local and a regional level. There is also the new health regions structure with the six health regions. We are working hard for proper representation at those structures for both voluntary organisations and patients and service users. That is a massive area where there can be pushing for standardisation and equity of access at a local level. Unfortunately it goes back to who shouts loudest and where there is strong advocacy. At an individual level, where there is strong advocacy, people tend to get the hours or to get more service. That is not right. It is really not right.

Tom Clonan (Independent)
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I thank Dr. Begley for her work in that area. I did not receive an invitation to the launch of the national strategy. The document that was presented on that occasion has about 100,000 words in it. The word "equity" appears once in it. We have a lot of work to do. I will conclude by thanking the IWA for the amazing work it does and thanking the DFI and Leap Ireland for the work they do. I thank them for giving us their time today. It is much appreciated.

Mr. Michael Doyle:

The Senator raised the issue of the regions and the understanding. We are now at a critical point of seeing personal assistance being diminished for future and current generations through a lack of understanding within the HSE of what it is. The Senator made the point that there is no willingness or understanding. It is all getting rolled into one for convenience and administration. If this continues, we will not be talking about personal assistance in the next generation; we will be looking at home support and care services. That is a real pinch point we need to resolve now. Dr. Begley has outlined that we are engaging with it. On a day-to-day basis, we are talking to genuine people within the HSE who are hearing about the personal assistance service for the first time. They have come from somewhere else and there is no structure to support them. It is critical that we get this right. I thank the Senator for his support with that.

Mr. Brian Dalton:

I was here in 2019 when the motion for the right to a personal assistant was passed. I have not heard anything about the progression of that motion since then. We need to keep that on the agenda as well. Disabled people have the right to a personal assistant.

Tom Clonan (Independent)
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My 2023 Bill, which I hope will go to its Final Stage next week, addresses that issue. I am hoping to persuade either a Government party, or a large Opposition party that shall remain nameless to introduce it in the Dáil and get it enacted. We are beginning to see the beginning of collective political will to address our fundamental human rights issues.

Gillian Toole (Meath East, Independent)
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I thank the witnesses for making the journey to meet with us. I apologise because I was so late. I can only appreciate the difficulties in the witnesses' journeys in getting here and navigating traffic and public transport alike. I apologise. I hope my questions have not been duplicated. I also thank the witnesses for the preliminary information in advance and the secretariat for the supporting information they have provided to us as well.

My first question is relevant to personal assistants and to personalised budgets. The key objective from all three of the representations is living independently. What are the key priorities to live independently in concurrence with Article 19? Are there any low-hanging fruit? Not to be disparaging, but are there opportunities for progress in the short term? I note the timelines of 2016 and 2019 with regard to reviews and task forces, etc., with 2021 being more recent. Everything is moving extremely slowly. It is totally unacceptable. Are there easier opportunities for progress in the witnesses' opinions? I raise the simplification of the personalised budget process to improve accessibility. Do the witnesses have suggestions in that regard?

In terms of personal assistants and personalised budgets, how can the supports in those areas be integrated with housing, education and transport, even as key areas, to create a coherent framework for independent living?

A specific section or committee within the Department of the Taoiseach has been established to look into and co-ordinate disability matters. Do the witnesses have any input in to that? What are the most important supports during the key life transitions, say from school to adulthood, from school to employment and from the family home to independent living? What are the most important supports required there? The witnesses can answer any of my questions and in any order. I do not mind. It is discursive as opposed to questions and answers from my perspective.

Dr. Emer Begley:

We talked previously about the need for a national model for PA. It is fundamentally important. Leadership needs to be shown around that at a HSE level. We understand, under the new national strategy, a general manager will be appointed for the development of a PA model. Again, it is not just about a model. It is about implementation of same.

We are aware that the disability unit in the Department of the Taoiseach is in place now and has developed a strategy. We have not had any engagement with it to date or consultation on its strategic focus. I will turn to Mr. Doyle for a bit more.

Mr. Michael Doyle:

The general piece in relation to what we could do was asked previously and we did not get to answer in full. Recruitment and retention is an element of it. There is a budgetary piece in having a budget available to support people, be it a personal assistant budget or a PA budget, that is actually personalised. There is a challenge in recruiting staff into that field at the moment. We talked about the alignment to HSE pay scales, but there are also other more practical things we could do in relation to social welfare payments for individuals working as PAs. There is a cap that restricts people taking up positions. A lot of people who work are on social welfare benefits because the flexibility allows them that and the role we require allows for flexibility within it. Many of them wish to work further and take on more hours but if they do, they are penalised. There is a piece in relation to that.

The Deputy also asked about the transport-housing transition from home living into people living in their own community as part of normal society. There is no one answer to that because of individual needs. Every individual needs a different support. What that particular individual needs at that point in time needs to be looked through that lens. It is not that the person should be allocated a volume of service when they are aged 21. That may change through employment, education or taking up relationships the same as anyone in society. A flexible approach is needed. It also needs to be a holistic approach that looks at what support that person needs.

Before the Deputy arrived, we had some discussion on the cost of disability. That is a significant barrier. In a lot of cases, for people to take up employment and enter at a lower level is a financial disincentive to take up that employment, with the equipment and support they may need to do it. We then have people who are struggling right now to have the lights and heat on, who are making choices on a cold morning like this. That is similar to other people in society but there has been a recognition, in the Indecon report and further reports, of how people with disabilities have an extra cost; that is Government recognised. The fact that it has been recognised means it needs to be addressed. We are not expecting that should happen overnight but there needs to be a staged process to it. Somebody who has a permanent disability and is working but does not have a medical card is not an equitable approach to have in society. From my own experience, there is a significant cost to be part of a working society and there is absolutely no incentive for that at the moment.

Ms Cassen will talk about education. She has a better insight into it.

Ms Rachel Cassen:

In terms of the transition from school, it is very important to say that Leap Ireland works with families with children with intellectual disabilities and-or autism. The personal budget and the personal assistance model are different. This is a simplification but the personal assistance model, as I understand it, supports more individuals with physical disabilities who are able to self-direct. Individuals with intellectual disability and-or autism who are eligible for disability support services may not be - yet anyway - in a position to self-direct their own funding and supports. The role of the family or other allies around the person is very important. In other countries where personal budgets are available, unless the person, with the support of their family, is able to develop a vision of an ordinary life with valued roles, they will simply use their money in an individualised way to buy back traditional services. That is a waste of time. That is not the outcome we are looking for. We are looking for people's lives to look similar to the lives of their brothers and sisters. How do we do that? We use the money to support them to move out into the ordinary community to live what we call, sometimes, a good life.

Trained supporters who understand and are led by the vision of the person are needed. Who provides that work? This is where we talk about the landscape of community supports, including DPOs and family-led organisations like ourselves, which employ people in roles, such as inclusion facilitators, to work with the person to embed them into ordinary community life. That is not a quick fix; it is long work. It is a very different way from the way, for example, employability currently works. Providing support to get a person into college, to see they are integrated into college, providing support to find somebody a suitable job, supporting them in that job and fading those supports over time, have proved very successful in other jurisdictions.

We need to get away from spending the budget just on clinical supports. After people get to adulthood, they have probably had a lot of the benefit they are going to have from clinical interventions. What else is needed? We are looking at using the funding to support them into valued roles in the community.

Mr. Brian Dalton:

I will add that the disabled person should be kept at the centre. Remember that a user-centred approach is what we need. It is not always appropriate to give a disabled person a bus pass. Why not invest money in personal assistants to assist disabled people to get from A to B, if they might not even be able to get on a bus? Why not invest money in personalised budgets to allow them to take charge of their own life and to lead their own vision?

Maurice Quinlivan (Limerick City, Sinn Fein)
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That concludes the first round. We have time for a second round, so we will move on to that.

Ruairí Ó Murchú (Louth, Sinn Fein)
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Go raibh maith agaibh go léir. I will chase up on what Mr. Dalton said about user-centred. Ms Cassen said that in a perfect world, and a best-case scenario, we are probably talking about 30% of people who would take this up. We can have a conversation, as Senator Clonan and others had, on legislation as regards dealing with that. It is about the scenario of how we do this so it is sufficiently bespoke while, at the same time, allows for a level of flexibility. The big issues we have heard about here a number of times are the issues that exist with the wage subsidy scheme, with work and access, that workability is not exactly where it should be and then the fear people have of losing necessary benefits and payments. As much as we need to be ambitious in getting people into employment, we also need to make sure we do not, for want of a better term, screw them over when it happens. I am putting that back to the witnesses.

Ms Rachel Cassen:

I have a son who has had a personal budget since leaving school 14 years ago. He has been able to work, live independently, travel and live a good, ordinary, meaningful life. Recently, his most current job contract came to an end. It was a two-year job contract. Even though he is in receipt of disability support services through a personalised budget, his disability allowance has been refused him. Obviously, his disability has been confirmed through the fact he is eligible for disability services, but that is not good enough for disability allowance. It is said that because he has worked, he has not got a sufficient enough disability to get his disability allowance back. That is really harsh.

Ruairí Ó Murchú (Louth, Sinn Fein)
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We are often promised that there will be flexibility if someone goes from employment and needs the allowance returned, but we have all dealt with issues like that in constituency offices.

Ms Rachel Cassen:

Absolutely. That is a key area that needs to be addressed because if people lose their benefits, including their secondary benefits, it makes them terrified to take up a job. That fundamentally has to be addressed.

Mr. Michael Doyle:

We are talking about PA. The heading today is PA and personalised budgets but this reflects and applies to the whole life experience of somebody. This is just the anchor point and a starting point, whether it is for education, employment, transport, travel or living their lives. It is the holistic approach that needs to be looked at in relation to it and the acknowledgement, again, that there be a PA service or personalised budget that needs to be defined and flexible to support people.

At the moment it is arguable whether it actually is prioritised or it is given lip service. Mr. Dalton mentioned how centrally there are limited supports for him to manage his current service. Only a limited number of people in Ireland took up the pilot. If that is to be expanded there needs to be investment at that level in relation to driving and supporting it.

Ruairí Ó Murchú (Louth, Sinn Fein)
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I would throw out the idea again about a needs analysis so that we can have a real conversation on what is required.

Dr. Emer Begley:

There is also a need for support in education and awareness for employers. If someone wants to go into employment, having their PA may be the only way they can physically go in and out to work. Employers need to be aware of that, they need to facilitate it and it needs to be seen as a fundamental part of reasonable accommodations as well.

Ruairí Ó Murchú (Louth, Sinn Fein)
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As we have already said, work and access and all those other reasonable accommodation schemes are not fit for purpose at this time. You will hear that if you speak off the record to Ministers and officials. We really need to fix that entirely. We are nowhere near dealing with that.

Our perfect aim would be that we have a mainstream that can facilitate if not everybody most of everybody but we are a long way off that. We are only talking about putting therapies for one cohort of people into special schools and we are a long way before we will see that introduced into mainstream. It is about advancing where this needs to go.

Ms Rachel Cassen:

As everyone has spoken about this morning, it is about looking at what endures and what is worth focusing on over a lifetime. We always come back to three things - inclusive education, open employment and individualised funding - as an enabler of a good life, an ordinary life, putting the person and their support circle or network in the driving seat. Any restrictions around the use of individualised funding obviously have to ensure it is staying within the law and what is reasonable. At the moment, there are so many restrictions on how a personalised budget can be used it is really problematic. It is part of the heavy bureaucracy around the personalised budgets approach. Using it to go to work, let us make it typical, normative and highly valued. Let us get away from this idea that all that disabled people need is care and support. Actually, no - they need a whole lot more. That is fundamental. Let them use it to go to work. Let them use their funding to get a car and put petrol in it. Let us really have a vision around this and make it really transformative and powerful. We can choose to that.

Ruairí Ó Murchú (Louth, Sinn Fein)
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To be all they can be.

Ms Rachel Cassen:

We can absolutely choose to do that.

Maurice Quinlivan (Limerick City, Sinn Fein)
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We will move on to the Social Democrats and Deputy Quaide who has five minutes.

Liam Quaide (Cork East, Social Democrats)
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I thank the Chair. Can anyone on the panel comment on the working conditions of personal assistants, their level of pay, professional requirements and training and how we can ensure a consistent high professional standard among PAs? How can we improve recruitment and retention of PAs?

Mr. Brian Dalton:

On the self-directed service, the disabled person is in charge of recruitment. For example, in my case, I would get CVs in, assess them, go through them and decide who I am or am not going to bring forward, as many disabled people would do who are in a self-directed service. We then meet the prospective personal assistants. They go through an interview process just like I went through for my job. They may go through another round of interview - which they do in my case, because, again, it is self directed - as I would have had to do in my job. If suitable, they are offered a contract with a probationary period of six months, just as I am in my own role, and they must pass that probationary period to remain with the leader. Throughout the whole process the disabled person is in charge and in control of the training. I have training requirements based on the requirements I have and the skills I need and I control and direct the training. They are required to undertake mandatory training from the HSE. For example, they have to be certified for manual handling because obviously there is a physical aspect to the role as well.

The pay is often a challenge. Take the cost of living, for example. It is going up and up. You will not get a personal assistant to work for less than €20 per hour in Dublin. That is a fact. For anything below that it is not going to happen. Pay is a challenge. We have spoken about pay parity already in terms of the HSE. Obviously, the cost of living will go up. You have to attract the person on the right pay scale first but then you want to retain them. Disabled people, with the limited budget that they have, do not often have the scope to have pay increases. There are lots of hidden costs that the employer must cover which are not borne by the HSE. Take Sunday hours, for example. Most people will not work for regular pay on a Sunday. There are bank holidays. There is statutory sick leave requirements which must be covered. We also have the new auto-enrolment system which will come in in January. All of these costs detract from the budget of a disabled person and detract from the number of hours that a disabled person can employ a personal assistant for because you have to have reserves to meet these legislative requirements which are not, at the moment, picked up by the HSE. You then have to have accounts which have to be submitted and they are not cheap. I do believe that if the right supports and funding structures are in place, it is possible for disabled people to attract the right people into the role and personal assistants can build a career from this. The training and self development is ongoing by many disabled people. That continues, as it would in my job, through the time the personal assistant is with them.

Mr. Michael Doyle:

Mr. Dalton spoke about the personalised budget for an organisation that operates PA services, which we do. A number of actions can be taken in relation to recruitment and retention. The biggest one is that we are recruiting people to do a shift for three hours in the morning and two hours in the afternoon, perhaps. This is an outdated approach to how this works. Even in the HSE and other jurisdictions, we need to be recruiting people where they are guaranteed so many hours for a period. If an individual whom they are supporting as a personal assistant goes on holidays or winds up in hospital, there needs to be a guarantee that their salary will be paid. At the moment, only contact time is paid and that is a major disincentive. We already discussed social welfare and the cap. That is something that is reasonably easy to address without adding anything to the costs for the Government - it is just a process that needs to be addressed. There are some easy wins, low-hanging fruit, that could be picked off here. We have been bringing those forward and it is something worth looking at again.

Maurice Quinlivan (Limerick City, Sinn Fein)
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I thank Mr. Doyle. We will move on to Independents. Deputy Toole has five minutes.

Gillian Toole (Meath East, Independent)
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Solutions are always coming forward but it is the action piece that is the logjam. I will be cheeky. On formal structures, the HSE is the overarching body with some involvement by the Department of Social Protection. Are there formal structures for to and fro, feedback and meeting? Are there deadlines? Are there progress reports? There is some stuff available online but is there an actual structure and commitment to meet objectives in all the different policies to move? When I look back on the timeline and I see 2011, 2016, 2019, 2021, historical attendances by representatives of the organisations present here, I wonder is there a formal structure. I may be corrected if I am wrong but the remit of this committee will be to collate everything it hears and then present it in an action plan.

A lot of that has already been done and it is probably frustrating the hell out of all of the witnesses. How do we actually get results?

Dr. Emer Begley:

There was a HSE PA review group. It has not officially stopped but it has not met in some time. Its job was to develop a definition and model of personal assistance, and recommendations for legislative and policy change. The group produced a draft working definition of "personal assistance". Since then, there has been a commitment at a departmental level. There was work happening in the Department on the development of a PA model, but then things paused. Our understanding is that, due to the reconfiguration of the HSE into the health regions and the development of the national strategy, things have not realigned. There is a commitment in the strategy for the development of a PA model and within that, we would really call for a governance structure that includes disabled people, disabled persons' organisations, DPOs, civil society, and organisations in the community that are working at providing PA services because they have a huge amount of knowledge and expertise as well. That is in relation to the PA side but that PA review group has not met in some time.

On personalised budgeting, the National Disability Authority has an advisory group that would have good representation by stakeholders to support the review of personalised budgeting, but as others on the panel have said, the staffing for personalised budgeting is very small. It is nearly non-existent now in the HSE, with one not even full-time member of staff who looks after this area on a national level. Commitment needs staffing to drive it as well. There are the issues on the ground with PA pay alignment and terms and conditions, and staff are needed at a national level to drive the implementation of policy.

Ms Rachel Cassen:

There is definitely a pent-up demand for personal budgets. Currently, I think 52 people are at stage 4 - the living their life stage - on the personal budgets demonstration project. There are upwards of 250 individuals who have put forward an expression of interest but have not yet started with a personal budget.

What happens to those people and pent-up demand? My strong sense is that the evaluation, which is due to be published in quarter 1 next year, will not show really strong outcomes from a personal budgets approach because of underresourcing. There has been chronic underresourcing of the project because of Covid. At the time, one staff member was taken across to work on procuring personal protective equipment and was not even working on this project. There are other difficulties that have fatigued the project in its long duration.

What are we going to do if the outcomes from that evaluation are weak? Is that it and we are saying we are walking away? I do not think we have that choice. That is where legislation is really important because legislation will drive personal budgets. My belief is that the HSE will then get behind them and we will begin to move forward but they cannot come off the table. For such an important enabler, we really need to be committed to keeping them on the table and expanding and resourcing them properly.

Mr. Brian Dalton:

There are two things I would mention. I work in the area of digital accessibility. That means that mobile apps and websites must be accessible to disabled people or users of assistive technology. To back that requirement, we now have the European Accessibility Act and we need something similar around independent living and the provision of personal assistance and personalised budgets.

Liam Quaide (Cork East, Social Democrats)
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Decongregation was briefly touch on. I know decongregation has not been the main focus of today's discussion but I am interested in hearing from anyone on the panel their opinion on how decongregation is going in this country.

Yesterday, I received a response to a parliamentary question that showed increasing numbers of people with intellectual disabilities were living in facilities that had been privately outsourced. The outsourced services now make up 15% of residential services. That is up from 8% at the end of 2021, 9% at the end of 2022 and 12% in 2024. I know anecdotally that some of those residents live very far from home, hundreds of kilometres away in some cases. The HSE has told me that it does not keep data on distances from home even though detachment from one's community is a clear breach of rights under the UN Convention on the Rights of Persons with Disabilities, UNCRPD. That is very concerning. Some of these residential services are also in quite remote locations, so residents are not integrated even in a new community for them. We are on a worrying trajectory. I am interested in hearing the witnesses' views.

Ms Rachel Cassen:

We absolutely are on a very worrying trajectory. When for-profit providers come into this space, it is very problematic. It goes back to the vision we hold for people. When people are segregated from a young age and cast into devalued roles, this is where they end up. This is how their life trajectory pans out. When no support is provided to families and they are clearly struggling with a child in the family, then the cry for residential support comes forth. It takes us putting supports around people when they are young and having a vision for them to work, be integrated in communities and attend the same schools as their brothers and sisters. We cannot address any of these aspects in isolation. It really is an holistic belief that everybody belongs - all of us together, no "them" and "us". Otherwise, these horrendous outcomes happen. People are far from home in very isolated places and congregated together having their days and, indeed, their lives wasted.

Dr. Emer Begley:

I believe a lot of it is crisis decision-making. On a Friday, somebody needs to go into some type of residential facility. Private providers are stepping in and the person potentially ends up hundreds of kilometres away from their homeplace. Initially, the placement may be a temporary measure but it ends up being a permanent one. There is a lack of long-term planning. The rates of increase in funding for private providers of residential care has been huge over the last number of years.

Liam Quaide (Cork East, Social Democrats)
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Yes.

Dr. Emer Begley:

It is extremely worrying. We talk about choice but choice is fundamentally taken away from somebody by that being the only pathway for them. There is a reform agenda within the Department of Children, Disability and Equality specifically on residential. We have been told that is at a very early preliminary stage.

Maurice Quinlivan (Limerick City, Sinn Fein)
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That concludes contributions. I propose that the opening statements be published on the committee's website. Is that agreed by members? Agreed. I thank everybody for coming today. Their useful contributions will be added to our work as we go forward.

I propose that we go into private session to deal with housekeeping matters. Is that agreed? Agreed.