Joint Committee on Disability Matters díospóireacht -
Thursday, 8 Jul 2021

Resourcing of Personal Assistance Services: Discussion

Chairman

Apologies have been received from Deputies Phelan and Hourigan and Senator Bacik.

The purpose of today's meeting is to discuss the resourcing of personal assistance services. On behalf of the committee, I would like to welcome Mr. Fionn Crombie Angus and his father, Mr. Jonathan Angus; Mr. James Cawley, policy officer, Independent Living Movement Ireland; and Mr. Paul McBride, chief executive officer, Mr. Owen Collumb, Mr. Gordon Ryan and Ms Fiona Weldon, Áiseanna Tacaíochta. I would also like to thank our witnesses for facilitating the change in the meeting time from 12.30 p.m. to 9.30 a.m. this morning. We are very appreciative of that. It is important that we acknowledge that the witnesses had committed to attending and changed their schedules to suit us.

I remind members that they are only allowed to participate in this meeting if they are physically located on the Leinster House complex or in the convention centre when the Dáil or Seanad is sitting there. In this regard, if members are joining the meeting remotely, I ask them to confirm that they are on the grounds of the Leinster House complex or the convention centre prior to making a contribution. For anyone watching the meeting online, witnesses are accessing the meeting remotely. Due to these unprecedented circumstances, I ask everyone to bear with us should technical issues arise.

Before we commence the formal proceedings, I must begin with some formalities regarding matters of privilege. I advise witnesses that they are directed to give only evidence connected with the subject matter of these proceedings. Witnesses are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise nor make charges against any person, persons or entity by name or in such a way as to make him, her or it identifiable. I advise the witnesses giving evidence from a location outside the parliamentary precincts to note the constitutional protections afforded to witnesses attending to give evidence before the committee may not extend to them. No clear guidance can be given on whether or the extent to which the evidence given is covered by absolute privilege of a statutory nature. Persons giving evidence from other jurisdictions should also be mindful of the domestic statutory regime. If witnesses are directed by the committee to cease giving evidence regarding a particular matter, they must do so, and respect that direction.

Members are also reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against a person or entity outside of the Houses or an official either by name or in such a way as to make him or her identifiable.

I now invite Mr. Fionn Crombie Angus to make his opening remarks.

Mr. Fionn Crombie Angus

I am grateful to be given the opportunity to speak to the committee today. It shows that the committee is keeping in mind the diversity of disability. The kind of support I need is time and help to think things through. I am happy that my dad gave up his work as a primary teacher to be my paid assistant. He will be reading some parts of my statement, but do not let that fool you - I am in charge and make my own decisions.

Mr. Jonathan Angus

Fionn became Ireland’s first person with a learning disability to manage his own HSE pilot personal budget nearly six years ago.

Mr. Fionn Crombie Angus

Personal assistance needs to be personal and flexible.

Mr. Jonathan Angus

An example of inflexibility is as follows. According to the HSE, Fionn's assistant must be trained in manual handling, even though he needs no support of that type.

Mr. Fionn Crombie Angus

I would welcome applications to be my assistant from social care students in colleges where I lecture, but I would prefer someone with skilled in music or making films, regardless of what is on their CV.

Mr. Jonathan Angus

The ideal personal assistant is not always found within the family, but sometimes she or he is. Think of those disabled with dementia or those who do not use words. A person they know is usually the best assistant.

Mr. Fionn Crombie Angus

Paid family support must be allowed. Who has choice and control in my life?

Mr. Jonathan Angus

Service providers sometimes use bundling as an excuse to keep funding. The funding only belongs to them if disabled people want their service, and the individuals have the right to end the contract at any time. Other young people in Ireland with similar impairments to Fionn receive an HSE budget nearly three times what he has been granted. Neither they, nor we, understand the discrepancy.

Mr. Fionn Crombie Angus

Call it the HSE lottery.

Mr. Jonathan Angus

Fionn asks for transparency, with the allocations spent in people's names, whether they manage those funds or not.

Mr. Fionn Crombie Angus

The HSE required us to set up a company, so we formed a social enterprise, Fionnathan Productions, which then hired me. I teach in primary schools for the Heritage Council, lecture at universities, make films and play music.

Mr. Jonathan Angus

Earned income makes up four fifths of our running costs and the wage subsidy scheme helps cover Fionn's salary.

Mr. Fionn Crombie Angus

Working as a public speaker, I have visited more than 20 countries.

Mr. Jonathan Angus

The HSE cannot or will not tell us why they sometimes allow Fionn to pay work expenses out of his support budget and sometimes refuse. The non-programmatic costs of management, administration, insurance etc. for a personal assistance service must be financed in addition to the deliverables.

In England, which has decades of experience in providing person-directed services, people use their budgets to go to the gym, pay for a conference or cover lunch with a friend. Having a good life often involves a paid assistant but there are other ways to creatively support community involvement.

Mr. Fionn Crombie Angus

I know how best to use my own resources.

Mr. Jonathan Angus

Fionn needs an assistance service rather than exclusively an assistant service.

Mr. Fionn Crombie Angus

In summary, allow us the freedom to decide how our budget is spent and to hire who we want. Make funding transparent and transferable. I thank the committee.

Chairman

I thank Mr. Fionn Crombie Angus and Mr. Jonathan Angus for their evidence and we look forward to further engagement during the meeting. I now call on Mr. Cawley to make his opening remarks.

Mr. James Cawley

I thank the Cathaoirleach and members of the committee for their invitation to contribute today. I thank the committee for the series of inputs that were dedicated to Article 19 of the UN Convention on the Rights of Persons with Disabilities. I commend the Deputies and Senators who have engaged to date on these matters.

To tell a little about myself, I am a son, brother, husband, friend, co–worker and very proud disabled person who uses a personal assistance service to live a life of my choosing. Growing up in rural Ireland and being the youngest of nine siblings, my independence and activism skills were fostered from a very young age. I went through education and progressed to university and now work in full-time employment and live with my wife, Ally. I have received appropriate supports to live and experience the same life as my non-disabled peers. These supports include assistive technology, a powered wheelchair, peer support, a special needs assistant, exam accommodations, accessible transport, accessible accommodation and personal assistance. These supports have allowed me to make fundamental decisions and choices throughout my life.

With that said, I am very proud to be here representing a movement of disabled people across Ireland in my role as policy officer with Independent Living Movement Ireland, ILMI. In this opening statement I will bring the committee through an introduction to ILMI and the philosophy of independent living. I also want to speak about what a personal assistance service is and our PASNOW campaign.

ILMI is a campaigning, national representative, cross-impairment disabled persons organisation. We promote the philosophy of independent living and seek to build an inclusive society. Central to the way we work is to ensure that policy decisions that impact on the lives of disabled people must be informed by disabled people through our representative disabled persons organisations. Our philosophy can be summed up as nothing about us without us and rights not charity. Our vision is an Ireland where disabled persons have freedom, choice and control over all aspects of their lives and can fully participate in an inclusive society as equals.

ILMI was established as the first Irish centre for independent living in 1992 by and for disabled people in order that we as disabled people have choice and control over our lives, and fully participate in society as equal citizens. The personal assistance services that are now available in Ireland came into existence in 1992 initially as a pilot project. This was started by disabled people who designed a system in which they were in control of the direction, operation and management of their personal assistance service. However, 30 years on, the personal assistance service is still a pilot project. Disabled people in Ireland have no legal right to a personal assistance service despite national policies that support the deinstitutionalisation of disabled people. In addition, Ireland has signed and ratified the UN Convention on the Rights of Persons with Disabilities. As we all know, Article 19 states that disabled people have the right to live where and with whom they want and have choice, control and a range of supports in the community. Ireland is rich in policy development but we need to work together to implement our policies to ensure the rights of disabled people are upheld.

I will speak briefly about the philosophy of independent living and what exactly a personal assistance service is for many disabled people throughout the country. Independent living is about having the freedom to have the same choices that everyone else has in housing, transportation, education and employment. Independent living is also about choosing what aspects of social, economic and political life we want to participate in. Independent living is about having control over our lives to have a family, to get a job and to participate socially. My supports allow me to be a son, brother, husband, friend and co–worker.

For many disabled people, independent living can best be achieved by the employment of personal assistants to provide supports where needed. The personal assistance service is a tool that allows us to live independently. The personal assistance service enables us to do all the tasks that we cannot do for ourselves. It provides us with the freedom and flexibility to live our lives as we choose. A personal assistant is hired to assist us with a range of day-to-day tasks that we cannot physically do for ourselves. Many of us who use personal assistants say they are an extension of our limbs. Often, they are our eyes or our ears. With a personal assistance service we are in complete control. We direct the personal assistant to carry out tasks inside and outside of the home, including personal care, domestic duties and assisting in day-to-day tasks such as shopping, support in the workplace or socialising. A personal assistant does not look after or care for us. We delegate these tasks to our personal assistants and in doing so we take back control of our lives. A distinct benefit of a personal assistance service is that it reduces our dependence on our family and friends. The confidential relationship that develops between us and our personal assistants allows us to maintain a private life and our dignity. The personal assistance service is often the difference between existing and living for many of us.

To put this into context I will share an example. According to information submitted by the HSE to the Committee on Public Petitions in 2017, 1.51 million service hours were delivered to 2,470 people. However, these figures show that more than 84% of us who received a personal assistance service received less than three hours per day on average, with more than 44% of us in receipt of an average of 42 minutes per day. It is clear that anyone who receives an average of 42 minutes per day is not going to be able to live independently, access education or employment or become involved in meaningful social engagement. Disabled people with reduced services of this nature are unable to live the lives of their choosing. They are often trapped in their own homes without the chance to interact and do the things they want to do in life. They are prone to isolation, exclusion and institutionalisation in the home where they simply exist and not live.

I know the committee has dedicated sessions to deinstitutionalisation but I want to make reference to Wasted Lives. Too many disabled people under the age of 65 are inappropriately placed in nursing homes or do not have the adequate and appropriate supports to live a life of their choosing. If we think about this, can committee members imagine all their choices being taken away? Can they imagine being told when to eat, drink and go to bed and all of their decision making taken away?

We as a national disabled persons' organisation support the philosophy of independent living. Independent living is not just about living in a house or building a house. It is about all the pieces of the jigsaw fitting together. It is about our choices, our control and our dignity and having appropriate and adequate supports to have the choice, dignity and respect to live a life of our choosing.

We, as a disabled persons' organisation, have developed PASNOW, which is a national campaign. In consultation with our members, we have identified five asks. These are to define, legislate, invest, standardise and promote the personal assistance service. We want a universal accepted definition of the personal assistance service that places disabled people at the centre of any service provided and is directed by us to meet our needs to live independent lives. The personal assistance service is about providing us with the necessary supports, inside and outside the homes, to enable us to live a life of choice, dignity and respect. The personal assistance service needs to be separated from home help and home care with its own ring-fenced funding.

Our second ask is to introduce legislation to guarantee us the right to a personal assistance service, as per Article 19 of the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. With legislation, however, we need investment to increase the budget for personal assistance services by €12.5 million annually to provide an additional 500,000 hours each year to enable us to lead independent lives.

We want to standardise, promote and introduce a single standard assessment of need across all HSE community healthcare organisation, CHO, areas. This must include the provision and support for independent assessment of need, as per the Disability Act 2005, and the creation of a national standardised system that will allow for portability of services across CHO areas, meeting our social, personal and employment needs with no bureaucratic barriers. Finally, we want to ensure that we are all made aware of the availability of the personal assistance service in order that those who wish to lead their lives independently can access the necessary supports to do so.

In summary, I remind members that independent living is about choice and control. The personal assistance service is about giving disabled people that control. The committee should remember that we ratified the UNCRPD in 2018. We, as a disabled persons' organisation want a system that meets the needs of disabled people, which includes investment and standardisation to legalise the right to protect our rights to live independently. We believe this would be a way to realise and implement Article 19 of the UNCRPD. I would like to take this opportunity to thank all members of the Joint Committee on Disability Matters for listening. I look forward to questions or comments.

Chairman

I thank Mr. Cawley. We will now call on Mr. Collumb to make his opening remarks.

Mr. Owen Collumb

I thank the Chairman. I, along with my colleagues present, wish to thank the committee for this opportunity to make our representation. I will now make a number of points to give some background to our previous submission.

Áiseanna Tacaíochta’s, ÁT, mission statement is to provide leadership and support in Ireland to empower disabled people to direct their own lives and enjoy the same freedoms, choices, control and opportunities their non-disabled counterparts take for granted. As disabled people, we need daily personal support to carry out all our daily activities and routines necessary to live an ordinary life in our own homes. To do this, we need the support and assistance of other people. We call these people our personal assistants and we call ourselves "leaders".

We employ our own personal assistants and direct their work through our independent companies we have set up for this purpose. Áiseanna Tacaíochta acts as an intermediary or broker between each of the leader's companies and the funders, that is, the HSE, to set up a direct payment to our companies. This brokership model enables us to move from a service delivery model, such as residential care, to choosing and managing our own service, which is a personal assistant service.

Everything we do is underpinned by the philosophy of independent living and the social model of disability. True independent living allows individuals to custom-design their own supports based on their own individual needs, capabilities and aspirations and in doing so, it contributes to the development of a more equal and just society for everyone. We believe leaders are the best experts on their own lives and it is important that their expertise is listened to and valued.

The availability of direct payment options in this country is a hugely important step to have rights and independence and be equally recognised as disabled people. Áiseanna Tacaíochta commissioned National University of Ireland, Galway, to conduct research into our model. The overwhelming conclusion was that it was quite literally life changing for those who had the ability to take up this opportunity.

One of our strategic objectives as a peer-led organisation is to lobby appropriate stakeholders to make our model more readily available nationally and to ensure that leaders who undertake the ÁT process will be facilitated by Government to move to full independence.

As a committee, we are well aware of Article 19 of the UN Convention on the Rights of Persons with Disabilities, which deals with living independently and being included in the community. It states that parties to the convention recognise the equal right of all disabled people to live in the community and have choices equal to others, and shall take effective and appropriate measures to facilitate the full enjoyment by people with disabilities of this right.

As we work towards universal availability of the direct payments, ÁT has demonstrated to the HSE the benefits of our model, which has been accepted nationally within the HSE. On this basis, we requested additional funding to create more places to support new leaders all over the country in getting a direct payment. This request has been denied in the context of the ongoing personalised budgets demonstration projects. These projects are now significantly behind schedule by more than three years, however, having initially been intended to report in June 2020.

To achieve full independence, ÁT provides training and support to leaders to establish and manage their own service. Once leaders are experienced and proficient in this, it is our view that they should be facilitated to move to complete independence and sign their own service level agreement with the HSE rather than the brokership agreement. This facility is currently denied to them if they wish to have it.

We now make a number of recommendations going forward. First, we call for the immediate removal of restrictions on leaders to move to full independence, entitling them to leave a broker and be in receipt of their funding directly from HSE. This could be accommodated via the current demonstration project structures. This would, however, require the immediate implementation of the demonstration projects in a much more comprehensive manner than is currently the case.

We call for immediate action to make direct payments available to all leaders who desire to choose direct payments for themselves. We have been waiting too long for the HSE demonstration projects to complete their evaluation. Leaders are in situations today where their freedom to choose is being denied, which is an infringement of their basic human rights under Article 19 of the UNCRPD. An interim solution is to make more funding available to organisations such as ÁT, which can, in the short- to medium-term, begin to increase capacity to support more leaders. This can be done against the backdrop of the continuing demonstration projects, with some agreement in place that leaders could migrate to one of the appropriate models that emerge from the demonstration projects.

We wish to incorporate capacity-building, in the form of a peer support group, and independent living training and its principles in the demonstration projects in order to enable less able leaders or potential leaders to become more self confident and to succeed in using the direct payment. Finally, we would like to change terminology in the committee's communications from "people with disabilities" to "disabled people".

Chairman

I thank Owen, James and Fionn for their contributions. I will now go to the members. Deputy Tully is first.

Deputy Pauline Tully

Good morning to all our guest speakers. I thank them for attending and for their opening statements. What they have outlined fits in very well with what the committee has been discussing over recent weeks. We have talked about people in residential care and young people being placed inappropriately in nursing homes. The main reason that happens is because supports are not there to facilitate them living in the community. We are not only talking about that physical support of a house, which is often available, but the supports such as the personal assistant service.

Some of the figures we have been given this morning are quite alarming. Mr. Cawley said that 1.5 million service hours are divided among 2,470 people has lead to an average of 42 minutes daily for 44% of users, which he rightly pointed out is not a personal assistant service. Can he explain the process for approval of a personal assistant service? Is it the case that not everyone who applies is granted the service? Is it based on funding? Is it because it is not a legal right?

Mr. Fionn Crombie Angus indicated that he is the first person with an intellectual disability to avail of a personal assistant service. Do many people with intellectual disabilities have a personal assistant service or is it largely confined to people with physical disabilities? Standardisation was mentioned by the witnesses. What exactly does this mean? Why is it important?

Transforming Lives says that 5% of the disability budget is used for the personal assistant service and 85% is used for residential and day services. Is that indicative of a model of care that is outdated and in total contravention of the UNCRPD? How can those figures be reversed comprehensively? Those questions are to whomever wishes to answer.

Mr. James Cawley

The Deputy has hit the nail on the head. When the figures are broken down to 42 minutes a day on average, we have to ask whether that is independent living or a move to institutionalise people at home. Realistically, personal assistance is about the freedom to make choices about when to get up in the morning, when to go to bed in the evening and so on. If you break it down, with 42 minutes per day, you would be lucky to get a slice of toast and butter it and have a shower routine, for example.

The standardisation point is vital. It is a postcode lottery at the moment. Ireland is broken into nine CHO areas. I might get different hours in Longford than someone else in a different CHO area. If I get a job in a different CHO area, I cannot move my service. There is no portability of services and that is across the board, not only personal assistant services. I mentioned when I was at university and my wheelchair broke down in County Kildare. Because it broke down in there, I was told I had to get my broken powered wheelchair, which is one of my independent living supports, to the CHO area where it was funded. That is something we need to move away from. That is why we need to look at standardising this process across the island and looking at a centralised system.

Mr. Fionn Crombie Angus

Very few people with learning disabilities have a personal budget. A lot of people - my friends - want this.

Mr. Jonathan Angus

They have often been turned down because of the bundling excuse. Also, they say that they need more information before they are willing to consider it. As Owen pointed out, there are long delays. Fionn was on the personal budget task force years ago.

Mr. Fionn Crombie Angus

That is right. I was on that.

Mr. Jonathan Angus

We have found the pilot projects are going very slowly. We learned from the ILMI that most of the people listed on the pilot project had not had their projects start yet, as of a month ago.

Mr. Fionn Crombie Angus

Yes, that is right.

Mr. Owen Collumb

On the frustration with the demonstration projects, the delivery of the task force is way behind anything we ever expected. The fundamental point behind setting up the demonstration project was to bridge the gap between the person with the disability or disabled person and the funder. We have been asking for funding to come directly from the HSE into our own companies which we have set up, or which Fionn set up. It cuts out a lot of the work between service providers and administration. We are prepared to run our own companies after some training and employ our own staff, do payrolls and be accountable for that money and have our accounts audited each year. ÁT is a broker system. We believe we would leave the broker system eventually having added more capacity and been aware of what direct payment was and have payment from the HSE into our own accounts which would be audited once a year. We would be accountable for that and go through all due process. Some people have budgets already which are really restrictive and offer them packages where someone comes into their home from 8 a.m. to 1 p.m. whether they need them or not. They spend that amount of time in their home and then they leave the disabled person who may not even have needed to spend money on that occasion. We are asking for a more flexible service where funding makes a direct pathway to the individual. We manage it and we will probably find better value which is what we found from our study with NUI Galway.

Mr. Paul McBride

I agree with Mr. Collumb that everything moves terribly slowly. AT has added 18 members over the past four years and we now stand at 42. We are capped, to some extent, at that level because of the lack of funding and we referenced that in the opening statement Mr. Collumb delivered.

On the point made by Deputy Tully on intellectual disability and a personalised budget or direct payment being available, 23% of our current membership have intellectual disabilities, and the payment is available to persons across the spectrum of disability. Typically, people who come to AT will already have a HSE-funded budget.

Senator Erin McGreehan

I confirm I am in Leinster House. I thank our guests for their contributions. I am jealous of Fionn having visited 30 countries and being a lecturer, teacher and everything else. It just shows that when people get an opportunity, they should grab hold of it, as we all should. We all deserve opportunities and to be able to grab hold of our dreams and create those opportunities for ourselves.

My first question is for Mr. Cawley. We all agree in order for the PAS system to provide independent living, it needs to have flexibility and choice and be a rights-based model. Are there good international examples? What form would such a model take in Ireland? How best can we implement those principles in Ireland, in light of the best models? As we know, we rarely have to reinvent the wheel but rather adapt it to an Irish model. How best can we do that in Ireland in line with the UNCRPD?

Mr. Cawley mentioned the lip service paid to personal assistants, who get so few hours. Is there a model for the best length of time that personal assistants should give?

Mr. James Cawley

I thank Senator McGreehan for the questions. Independent Living Movement Ireland has carried out research and produced a paper with the centre for disability law and policy at the National University of Ireland, Galway, which we launched in the audiovisual room at Leinster House. In examining other jurisdictions, we considered four options, one of which was identified as the standard or approach we should take, that is, stand-alone legislation.

As for where this has been done well, Sweden is seen as a gold standard for personal assistance services and it remains the only European country that legally confers a right to a personal assistance service. Other jurisdictions, such as the UK, Denmark, France and Germany, have legislation, but our research focused on stand-alone legislation because that is the point at which PAS could be given that ring-fenced funding. Moreover, legislation would protect the investment.

As far back as 1996, we identified that ten hours a week would suffice for a person's care needs but would not allow us to participate in all pieces of the jigsaw, such as engaging in employment, social life and so on. In Sweden, for example, at a local level anything up to 20 hours is funded to the person but anything over that goes from a centralised approach.

There is research and we have the report, which I would be happy to circulate to any member or the committee as a whole.

Chairman

We would appreciate Mr. Cawley circulating any information he might have. Does Mr. Collumb wish to come in?

Mr. Owen Collumb

I am not sure whether this applies directly to the Senator's question, but we see true independent living as the individual managing his or her own service and having the ability to manage the hours. Life is not one-dimensional; it changes from day to day, as the PAS does. When a person has a personalised budget, he or she can change that budget accordingly. He or she can pay for five hours in the morning one day and may not need all the additional time. The budget can be maximised accordingly.

I visited Sweden around 2000 to see its model in operation. It seems to have something similar to the way the AT network is set up. People can bundle hours and store them up for special occasions. They can spend the budget on that occasion if they are going out to socialise, for example. A large number of hours are given to people who just hold on to them because they are afraid they will lose them in certain circumstances, which does not make for an efficient service. It all comes down to money and hours at the end of the day, and we need to maximise those hours to live independently.

Furthermore, people need additional hours to live a full life in the community. Many people get hours just to get them out of bed in the morning and be put back into bed at night. That is not independent living; it is just surviving. It has been sold as independent living because there is a budget or hourly allocation for that. Direct payments are something we have to take on board. We have to get the demonstration projects up and running and test this model as soon as possible.

Mr. Fionn Crombie Angus

I am an international ambassador of the citizen network and a trustee of the national Down's syndrome policy group in the UK.

Mr. Jonathan Angus

As a result, Fionn knows a great deal about the exciting things happening in various countries.

Mr. Fionn Crombie Angus

Yes, I do.

Mr. Jonathan Angus

He has an offer for the committee.

Mr. Fionn Crombie Angus

I could share some information.

Mr. Jonathan Angus

The work is really unfolding. Fionn's work in the United Kingdom has led to a parliamentary Bill, which will be debated and perhaps passed into law.

What would it be called?

Mr. Fionn Crombie Angus

The Down's syndrome Act.

Mr. Jonathan Angus

If it is passed, it will be the first Act in the world that recognises the unique needs of people with Down's syndrome. That is where we learned that, in other countries, the budgets are not exclusively spent on hiring people to do work for people with Down's syndrome, which is an important tool - maybe the most important - in independent living. We learned of many exciting ways that people are using a small amount of funding to create amazing lives. We feel that an important message from the international scene is that money has to be spent creatively, not just on hours, but on lives.

Mr. Fionn Crombie Angus

Yes.

Chairman

That is an interesting point. We will be following that work. Mr. McBride has his hand raised.

Mr. Paul McBride

I will respond to Senator McGreehan's point about not reinventing the wheel. I agree with Mr. Cawley on legislating to guarantee the right to a personal assistance service. It needs to be addressed.

A large amount of work has been done by the task force, which is represented on this call. Mr. Crombie Angus, Mr. Collumb and Mr. Ryan were participants in that task force. Its report recommended the demonstration projects. We are all agreed that the demonstration projects are the vehicle for assessing the variations of personalised budgets. If there is one message that I could get across to the committee, it is that we ideally need to see some positive and meaningful progress on the projects. This is not meant to criticise, given Covid and other reasons, but there was meant to be a report in June of last year and we have still not seen any great momentum. If the committee put its political weight behind the projects, it would be wonderful. We need to see those projects brought to a conclusion in order that we can move forward with whatever they recommend as the correct model or models for a personalised budget.

Chairman

I thank Mr. McBride. Mr. Cawley wishes to contribute.

Mr. James Cawley

I will echo the point made by Mr. McBride and Mr. Crombie Angus. We consulted our members around the demonstration projects. There have been significant delays and some people have been given different messages, though, so it would be good to progress the projects. We must remember that the personal assistance service was originally set up to give people choice and control. We need to move away from the medical approach taken in Ireland. This would be one way of moving towards a rights-based approach and social model of disability. I support the points that have been made.

Deputy Violet-Anne Wynne

I wish each of our witnesses a good morning. We are indebted to them for their contributions to the meeting, which will inform our work. Our committee has been tasked with accelerating the transition to a social model, person-centred and rights-based approach to supporting disabled people in living independent and full lives.

I will make several observations and ask several questions. A member of the HSE is not present today, which might have been an oversight. This discussion would have benefited from the opinions of a representative of the HSE.

I have several concerns about the assessment of need in order to qualify for participation in the pilot. This is a right that was enshrined in the Disability Act 2005, and disabled people have reached out to me to say that after years spent battling to obtain their current services, they do not want to be reassessed, which is understandable. Why do we believe it is okay to reassess disabled people when they already fought an uphill battle, with a great deal of bureaucracy and jumping through hoops, to prove something? The discrimination that pervades these assessments of need is patronising and ableist. Disabled people are expected to rank their daily activities between essential and non-essential and to differentiate between personal care, community participation and domestic and social needs in a way that a non-disabled person would never be. For example, if a disabled person's social needs are more urgent than personal care, the same hours will not be provided if he or she mentions at assessment stage that he or she has a partner who can provide support for those needs. This could have a devastating impact on the individual's primary relationships. Suspicion and scarcity are at the root of these assessments. The subtext seems to be one of "Give them an inch and they will take a mile". We must strive for self-assessment with full alignment to will and preference policies must be striven for. Mr. Cawley made reference to this.

It is striking that the personalised budget demonstration is being piloted again despite the fact that it was first piloted in 1992 with EU funding through a programme called INCARE. It is unproductive and wasteful to allow progress on personal assistance services and personalised budgets to stagnate by not relying on direct lived experience.

Members of Áiseanna Tacaíochta - I struggle with the pronunciation, for which I apologise - have told the committee that they have sought funding to extend their life-changing broker model of personal assistance but have been refused. Between 2008 and 2018, there was no increase in funding for the provision of personal assistance. Since then, there has been a marginal increase, but one that is barely worth mentioning, as 84% of PAS users receive less than three hours per day. Even more disheartening, 44% receive less than 42 minutes per day. It is difficult to imagine trying to reduce the day's activities into 42 minutes. Would someone choose to have a shower, go for a walk, clean the house or do the shopping? It does not leave people with any time for hobbies, work, education or parenting. It tells us a great deal about our expectations of disabled people's lives.

A disabled friend of mine recently called trying to access service provision as akin to being on parole for life for the crime of having a disability. My friend must not violate the conditions of parole, in that she must be available for reviews and risk assessments and prove her impairment repeatedly. If her quality of life improves too much, she is threatened with losing her vital services and going back to square one. It is a life sentence without parole, as she would say. This is a stark but effective description of the disempowerment of disabled people.

My first question is directed to each of the witnesses. How can we as a committee offer our support to them in ensuring that the Government takes their experience seriously and does not delay the inevitable by issuing pilot after pilot?

What are Áiseanna Tacaíochta's main concerns about the personalised budget demonstration pilot's roll-out and how it meets the standards of the social model, the will and preference policy, the UNCRPD and empowerment? Given its representatives' direct lived experience and their knowledge of what is involved in the assessment, do they believe it is invasive and infringes on privacy rights by leaving disabled people open to a higher level of questioning and inspection than non-disabled people would ever be expected to put up with? Have they spoken to anyone who has been selected for the pilot and what has that person's experience been to date?

Mr. Owen Collumb

Áiseanna Tacaíochta is a brokership.

It is not what all people with disabilities would wish to run their service through. Áiseanna Tacaíochta know that is a huge issue and we are quite willing, as a board, to facilitate the transition from a person who would like a direct payment and perhaps to leave Áiseanna Tacaíochta and move on to a payment directly from the HSE to the individual. At the moment, Áiseanna Tacaíochta is just a brokership which facilitates money from the HSE, signs the service-level agreement with the HSE and facilitates the money being put into individuals' bank accounts. It offers administration advice and how to manage that money. There is also a charge then to individuals for that administration fee, which is considerable. Áiseanna Tacaíochta is not the answer to direct payments. I was a member of the task force. I am currently waiting for the service to be rolled out because I have applied for a direct payment through the task force. There are three models of direct payments - one which is less bureaucratic, one which is similar to ÁT and is similar to a brokership model and then there is signing a service-level agreement with the HSE and having money directly paid to the individual to run their own service. I emphasise ÁT is one model of direct payments. We need more models in the system. We need choice and control.

It would be incorrect for me to leave this discussion without saying the HSE model of delivering PA services has seemed to go down a different pathway where private organisations buy hours from the HSE to deliver services to people with disabilities. These are private companies which are profiting on the back of our disabilities. It seems to be the norm at the moment that the private company will be given a number of hours to look after us in our homes, workplaces or colleges. We do not need looking after. We decide on what we want to do with our lives and we can direct our lives in the way we wish.

That is just an overview of our organisation. It is not perfect in any way, shape or form. We are not a prison. We let people come to our organisation and leave it when they wish. We will even facilitate them with those choices as well. Members may call us the ÁT network if they find Áiseanna Tacaíochta too difficult. I thank the committee.

Chairman

Does Mr. Crombie Angus want to comment? Then we will go to Mr. Cawley.

Mr. Fionn Crombie Angus

I thank the Deputy for those questions. I want to proceed with the demonstration pilot project. I want my voice and experience to be heard.

Mr. Jonathan Angus

Do you know anyone on the pilot?

Mr. Fionn Crombie Angus

I do, yes.

Mr. Jonathan Angus

What have they told you their experience has been with it thus far?

Mr. Fionn Crombie Angus

They have mentioned the confusion and the waiting.

Mr. Jonathan Angus

Yes. People have also told us the amount of money they had already been assessed was the limit of what would be considered. They were quite surprised the Government is not putting in any additional funding into the individual funds of the people who are experiencing this.

Mr. Fionn Crombie Angus

Yes.

Mr. Jonathan Angus

If it is under-resourced to begin with, that puts into question the outcome of the pilot. What can we actually learn from that?

Mr. Fionn Crombie Angus

Yes.

Chairman

Thank you. I call on Mr. Cawley.

Mr. James Cawley

There has been much said around this already so I just want to raise three key areas that would cover it, or even the standardisation of this. First, we need a standard assessment of need across all CHO areas. Currently, for example, your application can be assessed by a public health nurse or an occupational therapist. They could be rooted in the medical model of disability and only believe in a care approach to people coming through their doors. By contrast, people who apply for a personal assistance service knowingly do so for assistance and not care. We need to make that difference between care and assistance distinct and change from the medical model of disability to the social model. These applications go to the CHO area and within that to what are know as community discussion forums or clearing house committees. Bear in mind that if I send in my application, I am not there. I repeat "nothing about us without us". I should be there and I should be consulted. Let us assume it is all non-disabled people sitting around a table talking about disabled people's needs and rights.

Deputy Wynne talked about the social requirements and needs we have. Currently, disabled people talk about their personal care needs and priority one. However, what about our social needs? What about what when I am working all week and want to go out for a pint on a Friday evening? We are human beings. We should be able to decide when and where we go. That came across very strongly in a consultation ILMI did over February and March when we were, as we all know, reporting back as a country on the UNCRPD. Particularly with reference to Article 7, when we engaged with young people they said their spontaneity is always impacted. When they are 16, 17 and 18 years of age they want to do what their non-disabled peers do. That is a really strong point we need to talk about. To return briefly to the example of the clearing house committee, we would not go to a men's shed and ask to consult on women's issues and that is something lots of people have said, colleagues included. We need therefore to start, under Article 4.3 of the UNCRPD, to engage with disabled people. We must engage with the representative organisations for disabled persons led by and for disabled people.

The Deputy asked did we know anybody in relation to the personalised budgets. We did a consultation with people in May. There was a huge amount of participation. People were frustrated about the lack of contact, of clarity and of a clear sense of a plan for how the demonstrator projects would be delivered. For example, many people had signed up in September 2019 and have been sent emails and calls had been made and not returned. Some people just want to know what the story is with this going forward. The lack of communication impacts then on their choice, their supports and their pathway to work towards the personalised budgets. We recommend full details and clear timelines for these models must be delivered. We need a clear commitment from the HSE, the Department of Health and of course the Department for Children, Equality, Disability, Integration and Youth, which is a mouthful, on the demonstration models as a pathway to personalised budgets for disabled people.

In 2019, a motion brought before the Dáil by Deputy Pringle was unanimously agreed. It was a historic debate. Following on from that, to try to link the local level to the national level and vice versa, we asked disabled people who use personal assistance services at a local level to engage with their elected representatives and local authorities to have a motion on a right to a personal assistance service passed. That work is ongoing. In light of Covid-19, four or five local authorities have not yet passed that motion. We are working to get that done. When done, we would like to progress the motion through both Houses of the Oireachtas to keep the issue live. I hope I have answered the questions put to me.

Chairman

I thank Mr. Cawley and I invite Mr. McBride to respond.

Mr. Paul McBride

I would like to come back on a couple of points raised by Deputy Wynne. She asked how the committee might assist us. As I said earlier, we would welcome some political focus on the demonstration project. We accept there are some flaws within it in terms of, for example, reassessment of need where a budget is already provided. There are restrictions around entitlement to participate in the pilot in terms of age and existing budgets. As mentioned by Fionn and Jonathan Angus, the question is around whether the project is adequately resourced. A budget of €1.3 million of public finding is ring-fenced for the project, which I understand will go towards funding 4.5 full-time equivalent staff plus a project manager. One wonders if that is adequate resourcing for a project that essentially will engage with 180 individuals through three different variants of a personalised budget. That said, as mentioned by Deputy Wynne, there have been attempts here before. We are where we are and there has been a lot of effort put into getting us to where we are in terms of the task force. I do not think we should allow a loss of momentum in terms of bringing this to a conclusion. If we do, we will be right back to the start. That would be a terrible waste of time and effort and it would be very disappointing for many people.

The Deputy also mentioned that Áiseanna Tacaíochata has applied for and been refused funding in relation to growing its numbers and to provide more spaces to individuals. The Deputy is correct that we have applied for funding through two different channels. We applied to the national office, HSE, for an increase in our core funding and we also applied to the Minister of State with responsibility for disabilities, Deputy Rabbitte, for funding under the strengthening disability fund for the same purpose. In both cases, we were declined the funding in the context of the demonstration project. That is the only show in town in terms of where personalised budgets will go. That was fine two or three years ago, but three years down the road there are people whose opportunity to avail of a direct payment is being denied to them while the project is delayed. There is need for an interim plan to provide small but not insignificant amounts of funding to organisations like AT so that we can, at least, provide some additional spaces to those individuals who are waiting while await the demonstration project.

Chairman

I thank Mr. McBride. The next speaker is Deputy Seán Canney.

Deputy Seán Canney

I listened intently to the witness presentations. I compliment Fionn Angus, James Cawley, Owen Collumb, Paul McBride and all of the other witnesses who contributed. On Mr. McBride's point with regard to the budget that is required now to move on with the personal assistance scheme, which he says is not a huge budget, does he have a quantum for it?

In regard to the personal assistance pilot scheme, do the witnesses believe it is just tokenism and a box ticking exercise? Is there a lack of enthusiasm or intent within the HSE and Department of Health to deliver on it in a timely fashion such that we get to the point where we can provide a national personal assistance fund? I am struck by the huge amount of expertise available to us through the witnesses here this morning, in particular Fionn's expertise in regard to best practice in the UK and internationally. The witnesses are a huge asset to us as a committee in trying to ensure that in whatever we do, we do some good.

I heard it mentioned that there is inflexibility in the system. I believe each CHO area is working in silos and there is no cross-purpose. Mr. Cawley mentioned the problem he had with his wheelchair and the distance he had to travel to get the problem sorted. It is silly things that are holding up people getting parity of esteem. What has impressed me most today is that all the witnesses are looking for, and all we should be talking about, is that they can take control of their own lives and make their own daily decisions. That is fine. The committee will take on board what has been said today. Any other information that the witnesses might have that they feel would be helpful, they should forward to us.

I might be talking out of turn but I understand we will be re-engaging with today's witnesses again because we will need them to help us to inform the Department and the Minister as best we can in our work. I thank the witnesses for the content of their presentations, in respect of which I have been taking notes. I have learned a great deal. I ask Mr. McBride to brief the committee on the level of funding required.

Chairman

I thank Deputy Canney and I invite Ms Weldon to respond.

Ms Fiona Weldon

I thank the committee for this opportunity. I am a PA user. I work for ILMI and I am on the board of the ÁT network. I have been supporting people to get an individualised budget. One of the key issues is that we are finding it really hard to debundle money already within a service such that people can take it out and use it as a personalised budget to live the life that they want. That is something the committee could look at. There is no system at the moment to help disability services or the HSE look at how they would allocate funding to a person that wants to leave a service and have a personal assistant as opposed to a day or residential service.

Chairman

I call on Mr. McBride to respond.

Mr. Paul McBride

I will come back to Deputy Canney on a couple of points and will reiterate something Mr. Collumb said earlier in relation to Áiseanna Tacaíochta, which is we are not a destination but are more of a journey, or a process. We see the ÁT network as an opportunity for people to develop capacity to manage their own support service. Then, they can move away from ÁT and sign their own service agreement directly with the HSE. There is no requirement to do that but ultimately, we see that as our final goal. At this point in time, as I said before, this is not available to the leaders. Therefore, for as long as they stay with ÁT, their arrangement via ÁT must be with the HSE.

To come back to Deputy Canney's question on funding, our board operates in a conservative and careful manner, working within our own capacity. Our numbers have grown by 18 over the last four years. Our recent proposal to the HSE, which was declined, was to grow our numbers by a further 18 over the next two years. To do that, we would have required an investment of €93,000, essentially to develop resources at our head office, to support those leaders who would have joined us. There would have been an offset, as Mr. Collumb referred to earlier, to the subscription fee the leader would pay to us for our service. Therefore, a net funding position of €53,000 was what we first put through to the HSE's national office, and then to the strengthening disability services fund. We were capped on the strengthening disability services fund at 1% of our public funding. That was €26,000. As I say, that was declined. That information gives a feel for the quantum. The demonstration projects look at 180 individuals and that was a €1.3 million budget. We felt that probably was not sufficiently resourced either.

On the point of tokenism Deputy Canney raised, the HSE's policy and strategy says the right things and uses the right language. The head of strategy and planning for disability services at the HSE addressed the Disability Federation of Ireland, DFI, recently. He talked about objective 5 of the HSE's corporate plan for 2021-24 on disability services, which was "to be the most responsive, person-centred model achievable with greater flexibility and choice for the service user". Certainly, at a national strategic level, the HSE uses the language we want to hear. Within the HSE's national service plan for 2021, personalised budgets are a committed area of strategic reform. It is there in the strategies and policies. However, it is unfortunate that the reality on the ground seems somewhat different. We are now three years down the road and we have made no progress on the demonstration projects. We feel, therefore, that the demonstration projects are under-resourced. There is a disparity between implementation and written strategy.

Chairman

Would Mr. Collumb like to make a comment?

Mr. Owen Collumb

I will keep this brief because of the time constraints. To come back to Deputy Canney’s question, the unbundling of funding is key. I come from the area where I had an accident. I was physically able-bodied and moved into residential care. I moved out of residential care into a house in the community, where I was looked after by a different agency. Thereafter, I moved from that agency into the ÁT network, where I am at the moment. Now, I am looking at moving towards the demonstration projects. Unbundling the funding is a nightmare. To have funding follow the individual is something on which we need to work much more. There are restrictions. Organisations do not like you taking money out of one organisation and transferring it into a different organisation. There are no processes or guidelines on how to do that easily. Typically, for my disability, I would have a budget in the region of €120,000 to pay my personal assistants. However, agencies do not typically like you to move money from agency to agency within short periods. They have administration staff and back office staff to pay. As Ms Weldon said, the unbundling process is key. Movement of money restricts people from having their choices and going to different agencies. That is about it. The key point, as I see it, is the ability of people to move from one agency to another or to be the service they wish to be in.

Chairman

We will move to Senator Higgins and then we will go to all of our witnesses. Senator McGreehan has indicated she has another question before we wrap, and I ask her to be brief.

Senator Alice-Mary Higgins

I thank all of the witnesses. This has been interesting. I was struck by Mr. Collumb’s last comment. It comes back to that question of choice. It is important to centre choice, both in terms of how time is used and of the priorities in life for the person with the disability. It strikes me that this is something we have encountered in the committee, in that Ireland drags its heels in delivering things and then the area moves on. We are, therefore, still talking about statutory home care. Now, we are moving towards an era where we need to look at statutory entitlements to personal assistance. Having not delivered the one, the other has now become crucial. It strikes me that this is the problem with some of the piloting. While there is a pilot under way, evidence of the important features already has been gathered. We do not need the pilot to see the importance of personal needs assistants.

Instead of relying even just on pilots, we could also look at models being successfully used in other countries. Sweden is one example. There is a statutory right to personal assistants in Sweden. This is accompanied by personalised budget. Is that model interesting? Is there much to learn in Ireland from that model in Sweden where it is a statutory right and is accompanied by a personalised budget?

I have a question for Mr. Crombie Angus and others, on which any witness can comment. In Sweden, it is possible to hire family members as personal assistants.. How do we balance that? It may well be good to be able to hire family members, but how do we make sure that it is not seen as a family carer role but is different and reflects the real, free choice of the budget holder? How do we ensure that control and leadership sit with the person with a disability? What safeguards can be put in place to ensure that dynamic? I was struck by the comments on the problem of privatised private company services. Does an assistant answer to the person with the disability as his or her employer? It is important that such assistants do, rather than them simply reporting to a private company about the services they have delivered.

How important is it to build into the standardised and good practice models clarity as to where direction comes from?

I was concerned to hear that there are limitations on the budgeting. No project will demonstrate everything that might be possible in personal assistance services because they are limited and constrained in their budgets, as Fionn noted. How can we ensure the learning the State takes from those projects will be supplemented by other, perhaps better practice, examples in other countries, as well as from those who may not be in the demonstration project but who are using personal assistance? Has the Independent Living Movement Ireland or ÁT been consulted on the research that is accompanying or will emerge from the demonstration projects? Are they getting to input such that the pilots are placed in a wider context of the collective lived experience of people who have used personal assistance?

James mentioned assistive technologies and their importance. Will he comment on those that can be used to supplement and support personal assistance services and how that can be done effectively?

I was struck by the point about social and cultural participation and the relationship aspect. It is another dynamic that applies to the family aspect. How can personal assistance services support people in their relationships with others? For example, could they support someone to support his or her family members? How do they support people to be a supportive husband, brother or co-worker, for example? Our guests might comment on how we can maximise the positive impact those using the service can have on others.

To clarify, Article 19 is the core issue. I would welcome comments on how personal assistance services, as opposed to merely care, fulfil the obligations of that article.

Mr. Fionn Crombie Angus

Safeguards are needed to hire anyone.

Mr. Jonathan Angus

There are always risks in being an employer, and there is a different set of risks if the person being employed is a close relation. There are risks also if the person being hired is a stranger. The system has to protect the person with a disability in all cases, but the protection needs to be balanced with the freedom of the person to do what he or she wants to do.

Fionn does not know much about the Swedish system but he wanted to give an example about his visit to Australia.

Mr. Fionn Crombie Angus

Yes. In doing my learning exchange in Australia, I found that the national disability insurance scheme assesses needs first, before moving on to wants.

Mr. Jonathan Angus

We often end with the deficit discussion of how a person is disabled and how much money he or she should get as a result of his or her disability. Australia has some problems with this system, but one good aspect is that there can be a further conversation about what would be good in the person's life and how he or she could be enabled to have the life he or she envisages. As a result of that conversation, additional funding is often available to encourage creativity and to fund not just people getting to the starting line, in order that it is fair and everybody is at zero instead of being negative, but also to help people to have a good life, and creativity is encouraged in that regard.

Mr. James Cawley

This goes back to the general question of the need for the disabled person to lead and be in control. It is interesting that during this meeting, all the witnesses have mentioned choice, aspirations and control. The one thing we all want in our lives - disabled or non-disabled - is that choice and to have aspirations and control. It is important that the wishes of disabled people be respected all the time.

That brings me to the definition of personal assistance services. We in ILMI, as a national disabled persons' organisation know the definition of personal assistance services, but among CHO areas and service providers, that varies. That, inevitably, leads to flaws within some service providers, in that it might become more of a care or home help role. A definition needs to place the disabled person at the centre and take account of our needs. In consultation with our members, we came up with a definition, and it is important that the definition is consistent among the CHO areas to standardise that approach. That is one way of helping to realise standardisation.

As I said, I can send to the committee a copy of the paper on the Swedish model. It refers to eligibility assessment, with the person in control. At local level, a person can get up to 20 hours, and if he or she requires more, that is done at a national level. Moreover, funding is in place and there is flexibility for a person to fully direct his or her service. In summary, the key aspects are eligibility in respect of cross-impairment, the funding being there and the fact that the local and national levels are linked, which is really good.

The point the Senator made about assistive technology is really important. We need to consider a suite of options and to pull out the tools from the toolbox of independent living that enable me and many disabled people to live independently. For me, those tools are a powered wheelchair, a personal assistant and assistive technology, such as an accessible house. Nevertheless, while we might live in a house, the assistive technology has to be implemented, whether motors on the door or whatever it is, to enable us to live independently.

That brings me to the final point, which relates to Article 19. A home or a house has four walls, but we need to be able to engage and live in that home with the range of supports such as personal assistance or assistive technology. Moreover, a house can be situated somewhere that is not close to transport and is not connected to the community or to the post office, the pub, restaurants or whatever the case may be. It is about being connected to one's community, and that reminds me of our public sector duty and obligations.

Under public sector duty obligations all public bodies need to connect the housing with the supports and the supports with housing and so on. I hope this has answered some of the Senator's questions.

Chairman

I thank Mr. Cawley.

Mr. Owen Collumb

I will go back to Senator Higgins's question about the learning from the whole situation around independent living and personal assistance. The learning that I have taken from it is how capable disabled people become when they are given the resources and the personal assistance service to live a life. Some of the most capable people I know have been people with disabilities. The people who have gone before me have inspired me. Otherwise, I would not have made the huge step from institutional care to living in the community. It was people with disabilities who inspired me to take that step. That is the real learning. The results should say that those people have made society better for us all and especially in Ireland. It is people being out and about, going to work, and normalising it in society. It is normal to meet an individual with a disability in the workplace now where it was not so normal years ago when it did not come so easily to us. We could not get on buses to travel. We could not get to the work places that were accessible. Such change has come from us lobbying politicians and the HSE. It came from good people with good intentions to make society more equal for everyone. If we stand side by side to progress we realise that society is not easy for people with disability to engage in. There is a huge range of issues still to iron out including direct payments, getting assistance services, assistive technology to include people with disabilities in the workplace, in education and in normal activities in their lives, so that a child who is born with a disability in Ireland today grows up with aspirations of leaving home, going to college, having a family and having a so-called "normal" life. That can be achieved by having a personal assistance package. Something that small can be life changing. The alternative is that people stay at home, depend on elderly parents, and become institutionalised when their parents can no longer look after them. There is a choice there between A or B in some situations. As long as we are in a position to lobby and have other people on our side to progress independent living, personalised budgets, accessible home environments and accessible work environments, we will make huge changes and advances for everyone. I have a disability. Ms Weldon has a disability. It could be a reality for Mr. Cawley, for example, or any one of his family members going forward. I will leave it on that note. It is profound that we are all on the same page in trying to achieve something valuable here.

Senator Alice-Mary Higgins

I have a very quick follow-up question. I noted the comments made by Ms Weldon on the assistive technologies not having budgets at the moment. In that bigger transformative picture on independent living I am very struck by the idea that there seems to be three or four pieces to it. We have focused a lot on the personal assistance service, which is core. In his previous contribution Mr. Cawley referred to the national disability inclusion strategy not recognising personal assistance, creating that equivalence between care and personal assistance and not pulling that out. In the personalised budget piece how important is it that we do not allow personalised budgets, which need to be increased, to let public services off the hook or that people have to personally pay for assistive technologies. There is an almost the capital infrastructure of the investment in assistive technologies. Should that and could that be a separate budget that is made available? I imagine that on occasion these may be very expensive purchases. Should it be separate to the idea of the personalised budget, which is how a person is living his or her life? As a committee we need to keep the pressure on so that the public services are serving everybody and that individuals do not have to try to find private solutions for public services that are falling short.

Does Mr. Cawley have a comment on the issue of personal assistance for those who do not have a physical disability?

Chairman

I thank the Senator. Which witness wants to take that?

Senator Alice-Mary Higgins

Those points are for James or for any other witness who would like to respond.

Mr. James Cawley

On the assistive technology, if we look at it from a public body perspective, Article 9 of the UN Convention on the Rights of Persons with Disabilities addresses accessibility. We often think about accessibility in the context of doors and steps but sometimes we do not think about accessibility in terms of websites, information, consultations and so on. That is vitally important. We must ensure as a society that all of these are made accessible under Article 9 and the public sector duty.

We would recognise, as do many people who are disabled, that assistive technology is as important as personal assistance. There absolutely should be provision to fund assistive technology to enable people who are disabled. Again, it goes back to the key method about the person deciding. For example, it is more important for me to be able to live independently than it is to have assistive technology, if that makes sense. The personal assistance service, the assistive technology and so on allow for the pieces of the jigsaw to be tied together.

Senator Alice-Mary Higgins

We need investment in both.

Mr. James Cawley

Yes.

Senator Erin McGreehan

I have a personal question for Mr. Crombie Angus and he may feel free to not answer. We all come to this committee because we have empathy and a belief in the UN convention. Empathy is all well and good, but we also need an investment in and understanding of people. These engagements help us with that understanding and make sure to give is a kick to keep going. How does this all make Mr. Crombie Angus feel that he is constantly pushing for this equity in his own country, in his own world and his own society? We all know that society is the barrier. We all put up those barriers. How does this make him feel? How does it make the witness feel when those barriers are actually pulled down? Mr. Cawley spoke about the assistive technology. Ms Weldon spoke about the ability to travel, and Owen spoke about his ability to live independently. How does this make them personally feel when the barriers are taken down and you are liberated? Please feel free to answer or not answer but I believe that this is the crux of what the convention is about. It is about creating equity and in the world for us all not just for some of us.

Mr. Fionn Crombie Angus

With the right kind of supports, disability disappears.

Mr. Jonathan Angus

Those supports are our community. Society puts up barriers. The support of our whole nation working together would address what we think of as disability from a social model. He also wanted to say something about the Senator's question on people who do not have physical disabilities but have assistants.

Mr. Fionn Crombie Angus

People who cannot use words need a very different kind of assistant.

Mr. Jonathan Angus

We know that in some quarters people are nervous about family members being employed. It is good to point out the difference between care and professional support. We talked about dementia and many other conditions where someone who knows and loves a person can offer the kind of support that people cannot be trained in. It is unique and that is why we feel many people with disabilities who speak very well say that they do not want their family to be involved with their professional support. That needs to be heard. We also need to hear from the people who do not speak as well and what professional family support can do for them.

Senator Alice-Mary Higgins

I thank the witnesses.

Mr. James Cawley

I again thank the Senator for the question. As I said, I am from a family of nine. I was always taught to fight for the spuds and get out there. I was told to go and do things and that I could not be treated differently. That has stood to me in terms of my resilience. My friends and family always slag me and say that if anything is wrong, James will write an email. It is good that we do that because we, as individuals, need to ask questions and challenge things when something is wrong so that we can change that wrong into a right.

The real magic for me was when coming through university I saw the power of collective action. That is where my activism moved from James Cawley being an activist into a collective. I joined lots of campaigns in university. I went on to be a teacher and empower young people, and saw how that can be done in a collective when we can educate people. I was fortunate to join ILMI as a staff member and connect with a movement of disabled people right across Ireland to see how we can move action from the individual to a collective. That is important.

There was a question about how the committee can help or progress this. A Dáil motion was passed in November 2019. We would love to progress and explore a Private Members' Bill that we have worked on with Deputy Thomas Pringle and bring a debate to the committee. I again thank the committee.

The personal question is great. It is amazing how things have transitioned for me from the personal to the collective. It is also amazing how collective action can start to break down barriers and change the medical model into a social and human rights model where we can all participate as equals. I again thank the committee.

Chairman

Thank you very much.

Mr. Owen Collumb

Having an acquired disability and being physically disabled has made my life very different. The big difference with having a disability is constantly asking for our rights, campaigning and so on. It is tiring to have to go back and take steps forward. Moving from institutionalisation to living in my own house and having to manage a personal assistant service is not something I want to do. I do not want more hours than I need. I like time to myself as well.

It is the pure exhaustion of asking for simple human rights that tires out people with disabilities. It is not the disabilities themselves per se. When we get on with trying to live an ordinary life, it is hugely tiring. We can lose our service if we do not meet the right requirements. Everything we do, including the basic things in life, are quite tiring for people with disabilities. We have to deal with simple things like accessing transport, planning our day out before we get out of bed, planning our trip or event and where to go for education in terms of whether it will be accessible. That is the main overview of the situation. We have to do it. We do not give in, but is hugely tiring for an individual on top of trying to live an ordinary life.

Chairman

I thank all of the witnesses, Fionn, James, Owen, Fiona and Jonathan, for their contributions. I thank the members of the committee. We are being empowered on a weekly basis by the evidence being brought by the witnesses to us and the engagement that is happening. It is driving the committee on to try to do better and to make sure we are doing the best we can to advance their causes.

There is an ongoing review by the HSE on the development of personal assistant services. We should take the evidence that has been given today, compile it and send it onto the HSE. We will consider that in our private meeting next week.

I again thank the witnesses for empowering us and for their evidence. We look forward to further engagement on other issues. I extend our sincere thanks for changing the time of the meeting to 9.30 a.m. It is greatly appreciated, given the movable feast going on between Leinster House and the convention centre. I again thank members for attending the meeting, and for their constant engagement and keeping the issues we are charged with to the fore.

The joint committee adjourned at 11.28 a.m. until 11.30 a.m. on Thursday, 15 July 2021.