Joint Committee on Disability Matters debate

Living with a Disability: Discussion

Chairman

Apologies have been received from Deputy Jennifer Murnane O'Connor. The purpose of today's meeting is to further public awareness of living with a disability. On behalf of the Joint Committee on Disability Matters, I welcome, from Family Carers Ireland, Ms Catherine Cox, head of communications and carer engagement, and Ms Jane Johnstone, caring employers promotions officer and family carer. They are very welcome to our first session. A wide range of issues will be discussed today and, if necessary, further and more detailed information on certain issues raised can be sent to the committee for circulation to members after the meeting.

Before we begin, I will read a note on privilege. Witnesses are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against any person or entity in such a way as to make him or her identifiable or engage in any speech that may be regarded as damaging to the good name of a person or entity. Therefore, if their statements are potentially defamatory, they may be directed to discontinue their remarks. It is imperative they comply with any such directions. Members are reminded of the same parliamentary practice and the constitutional requirement that they be physically present at a public meeting from within the confines of the Leinster House complex. I ask those members who are participating online to indicate that they are within the precincts of Leinster House prior to making their contributions.

Without further ado, I call Ms Johnstone to make her opening remarks.

Ms Jane Johnstone

I thank the Chairman and members for the opportunity to speak to the committee regarding public awareness of living with a disability. As a mum and carer to my two adult sons, Evan and Daniel, who both have complex disabilities, and an employee of Family Carers Ireland, I thank members for including the perspective of family carers in their discussion this morning.

Family carers and those they care for live on the outskirts of society, yet society remains dependent on family carers to care for our most vulnerable citizens, which we do with love but also with a deep longing to be part of the bigger picture. We believe that our inclusion and a greater public understanding of our respective positions would deeply enrich society at large. I know I have learned more from my sons than they have learned from me and I honestly believe they have made me a better person and can make us a better society. If it takes a village to raise a child, then it takes a society to include our most vulnerable people and the people who care for them.

I highlight the growing narrative with regard to the role of family carers, and the suggestion that they can in some way disempower people with disabilities or obstruct their autonomy, as well as an emerging aversion to the term "carer", which is perceived to be based on unequal relationships characterised by emotion and dependency. Carers and carer advocates want our loved ones and people with a disability to live full and equal lives. In many cases, however, including the case of my boys, the reality is that the person with a disability needs the support of a family member or friend in order to achieve this. My sons need me to dress, wash and feed them, arrange their care, manage their personal budget, etc. If I did not do those things for my boys, they simply could not do it for themselves. We must accept, therefore, that for many people with a disability, a family carer like me not only walks this journey with them but is crucial to their

participation and inclusion in society.

It has been our experience that it is not the disability itself which denies or limits full societal participation but, rather, it is the barriers that exist across society which prohibit us from social inclusion. While it is acknowledged that people with disabilities are recognised as having the right to equal opportunities and to participate in society, the barriers that impede inclusion remain. The absence of lifespan planning for persons with a disability means they and their families have a lifelong and difficult road to travel to attain even the most basic level of inclusion. We hear at first-hand from the families of children with a disability about the uphill battles they face every day. They face battles to get an appropriate school place or accessible school transport, the aids and appliances their child needs or an assessment of need. They then face further battles to get the support and services the assessment shows they need. They face battles for respite, to be put on a waiting list for essential therapies and to eventually be seen. We hear from families of adults with disabilities that the battle continues for adult day services, adult respite and, ultimately, residential care and housing. Too often, we hear from older family carers that they just do not know if they have the energy for yet another battle. Saddest of all, many hope their child will die before they do. Although they love the persons they care for intensely, their biggest worry is what will happen to them when they are no longer here to battle for them.

Described as ground-breaking legislation, the signing into law of the Assisted Decision-Making (Capacity) Act 2015 some seven years ago was a significant milestone in Irish legal history. It recognised that, as far as possible, all persons have the right to live a life of their choosing and play an active role in decisions about their personal welfare, property and affairs. While the Act is rightfully focused on people with diminished capacity or those whose capacity may be called into question in the future - referred to in the Act as the "relevant person" - there are many other relevant people who are critical to the Act and to ensuring its principles are respected and implemented. Perhaps most important of these are the family members and friends who care for a person due to illness, frailty, disability, a mental health difficulty or addiction and who are the most likely person to bring the legislation to life by assuming the role of decision supporter or intervenor.

The successful implementation of the Act is predicated on their willingness and ability to assume the various decision support roles legislated for and, as such, every effort should be made to consider their needs as we move towards full commencement of the Act. Of particular concern are issues relating to the general data protection regulation, GDPR, and transition times for carers for people with profound disability to become decision-making representatives, DMRs, through the court system. Neither of those issues has been fully acknowledged or addressed . Most distressing of all is the official response that Evan’s situation is inconsistent with the assisted decision-making legislation.

People with disabilities and family carers who have consistently challenged both societal and State systems have been the driving force towards the cultural shift required to become a more equal and inclusive society. As a mum and carer for more than two decades, my ultimate driving force and goal, just like that of the other 500,000 family carers in Ireland, is the preference and will of our cared-for people with disabilities along with their happiness and optimum participation in society.

My eldest son, Evan, is 22 years old. He has a diagnosis of profound autistic spectrum disorder, ASD, and profound intellectual disability, along with many underlying health conditions. Standing 6 ft 4 in. tall, he is completely non-verbal. I have loved and cared for my sons Evan and Daniel every day since birth, and as a lone parent since being widowed in 2014. I have regularly challenged the systems on their behalf while all the time knowing that no challenge will ever be our last. Due to the extensive nature of Evan's disability, he is unable to lobby for his right to inclusion or to make decisions that represent his best interest and safety. We must always respect the will and preferences of the person with a disability. I strongly believe that the person who is best informed to make such decisions when the person lacks capacity to do so themselves is the person who has cared for him or her throughout his or her life. I will apply to be Evan’s DMR through the Circuit Court but I am saddened that mothers and fathers in Ireland who are family carers must stand before a judge in the hope that they can continue to do what is best for the people they love. Where are my rights as my son's mother and family carer?

In conclusion, the social, cultural, political and legal elements, along with the level of public awareness in respect of equal inclusion for people with disabilities and their family carers, could also be described as truth, knowledge and power. We know the truth, we have the knowledge and we have the power to make it better for us all. Change is dependent upon will, and we must form a collective will so that we can truly begin to move towards a fairer and more inclusive society. I thank the committee for inviting us to speak on these issues. My colleague, Ms Cox, and I will take any questions members may have.

Chairman

I thank Ms Johnstone for that powerful opening statement and her personal testimony. It is very difficult and brave to put your personal story out there in the public domain and it is greatly appreciated by the committee.

Deputy Dessie Ellis

I thank Ms Johnstone and Family Carers Ireland for the presentation. The job of carers is a very demanding one. I have dealt with people seeking carers in my area and I am aware of the numbers involved in the context of the constant battle to get carers. An awful lot is left to the family members. Most of them do a marvellous job. The State should be doing more in that regard rather than an awful lot of emphasis being put on family members or other carers. There is a crisis with regard to carers, and certainly in delivering the amount of care that is needed across the system.

I invite the witnesses to discuss the growing number of elderly people who are caring for loved ones in the home and the additional supports that need to be put in place, especially for elderly carers. What further recommendations are needed? I refer to the issue of income and the limits that are put on carers when they are in receipt of social welfare payments and so on. How much of a hindrance is it? I know people have been refused a carer's payment because of income limits and all that. What are the witnesses' views in that regard?

I ask them to also discuss the UN Convention on the Rights of Persons with Disabilities, UNCRPD, the rights to privacy and dignity under the convention and the balance that is needed in the context of individuals advocating for themselves without impacting their rights to privacy and dignity. The committee has recommended that the Department work with disabled persons' organisations, DPOs, and other disability organisations to raise awareness under a national strategy. What is their view in that regard? How do they see that working?

Ms Catherine Cox

I will address some of those questions. Ms Johnstone can jump in on them, too. On the issue of elder care, quite a number of the 500,000 carers in Ireland are elderly people caring for a spouse, an elderly parent or an adult with intellectual disability. The pressures and challenges are significant. As regards respite, for example, even before Covid it was inadequate, inconsistent and completely unfair and inequitable. Now that we are coming out of Covid, it is even worse. Respite beds that were available are no longer there. In addition, there is the crisis in the home care sector and trying to get paid home care workers across the country. All of that has put far more pressure on family carers, who are trying to do it on their own without the required supports.

As regards strategy, the first national carers strategy was published in 2012. It is due to be renewed and refreshed, with additional funding. We still do not have a new carers strategy. The vision statement of the strategy states that carers will be recognised and respected as key care partners, supported and empowered. The harsh reality is that carers are neither recognised, respected, supported or empowered.

We carried out state of care research last year. Of carers surveyed, 88% feel the value of what they do is not recognised, 71% feel left out of society, 23% struggle financially and have had to cut back on essentials such as fuel and groceries, and 29% are living on an income of less than €20,000 per annum. That speaks to the issue of financial support raised by the Deputy. Carers are struggling financially and emotionally. The carer's allowance is a means-tested payment. Until that means test is abolished and replaced by an assessment based on need, carers will continue to struggle financially.

There are other issues, such as transport, which is a significant issue for people with disability and their family carers. It is key and causes exclusion for many in society. As the committee will be aware, prior to 2013 there were three transport schemes for people with disabilities and their carers, namely, the mobility allowance, the motorised transport grant and the disabled drivers and disabled passengers scheme. All of those schemes are gone. There is no current transport support scheme for people with disabilities.

To go back to access to vital supports and services in the community, there are more than 18,000 children on waiting lists for vital therapies. They are waiting on services such as physical therapy and occupational therapy.

They are being denied those services and the opportunity to develop to their full potential, and, yet, family carers, as Ms Johnstone said, are continuously battling for it. As a solution, Family Carers Ireland has suggested that additional funding could be put into the National Treatment Purchase Fund, NTPF, to pay for those through private sources. At least we would then eliminate the waiting lists and get to a point where new applications could be processed and supported.

The Deputy talked about dignity for people and the balance required with regard to awareness of the rights of people with disabilities. Awareness of the rights of the family carers is very important as well. No family carer or person with a disability wishes to go on the public airwaves, open his or her heart and soul and tell the world how he or she struggles. The reality is that he or she has to do that because the supports and services are not in place. What happens is that one case is probably fixed but the system remains broken. The main message today is that we have to fix the system. We have to put in place supports that support the family carer and people with disabilities to live, engage and participate in society. It is crucial everybody here today takes away that message. It needs a joint effort and everybody singing off the same hymn sheet.

Deputy Dessie Ellis

I understand about transport. We are constantly being lobbied about transport. I could go into many cases in that regard. Housing for people with disabilities is also an absolute disaster area. Efforts in that regard really need to be stepped up. The Minister and the Department need to do an awful lot more when it comes to housing, particularly as it is very difficult when someone goes to a local authority to get adapted housing or anything like that. We are all pressing in respect of this matter as much as possible.

Deputy Seán Canney

I thank everybody who has presented. I will follow on from what we were talking about. The 2012 strategy effectively has not worked. Has it brought forward or progressed matters? What are the most important things the witnesses wish to see in the new strategy? Have they been engaged with in the development of the strategy? Will they expand on the purchase scheme for buying in services from the private sector? I understand it is very difficult at present to get home care workers or carers, even in the private market. What else can be done to get more people to take up caring for people and become home carers? What incentives do we need?

I agree that the situation with regard to transport is absolutely desperate. We have nothing in place at present, and we continue to refuse to put anything in place. I received a reply to a parliamentary question reply about investment in public transport and how public transport will have disability-accessible vehicles, but we are talking about that happening over time. When one is living in a rural area, one does not have public transport.

Ms Catherine Cox

The strategy was published in 2012. It was called a cost-neutral strategy because we were in a time of financial crisis. Thus, additional funding was not put to it. Having said that, there were 42 goals within the strategy. Some were realised, most of which were cost neutral, but in the context of the biggest goals, such as respite beds and looking at gaps in respite services throughout the county, things went backwards rather than being improved. We need a new strategy. The key points that need to be included would absolutely be issues around respite, access to respite, where and when a family needs respite and when the person they are caring for needs it. Respite needs to be appropriate, consistent and equitable.

We know there is a crisis in the home care sector but there are things that could be done, especially in improving the terms and conditions for home care workers. We have two tiers at present. First, we have people working for the HSE who are paid well as home care workers. They get a pension and travel payments. Second, we have people working in the private sector or even for voluntary organisations such as ours. While they may get paid a good rate per hour, they do not have those additional terms and conditions, because the HSE does not pass them on to home care package providers. A big part of the problem is that terms and conditions are not good enough to attract people in to the sector.

People also need training. They need to see it is a good place to work and a good job. The role home care workers play in keeping people at home and maintaining independence needs to be recognised as vital, but it is not recognised as such at present. We continue to have a crisis. The next home care package tender is coming up in the next few months. We know regulation is needed, which is happening. There is still no statutory entitlement to home care. That is something we have talked about for many years. It is moving at a very slow pace. We probably will not see such an entitlement until next year. Things could certainly be done in the short term to improve it.

The Deputy mentioned the transport issue. We need a new transport support scheme.

Ms Jane Johnstone

I agree 100% with everything Ms Cox said. I will give my perspective in the context of lived experience. The Deputy mentioned home care workers. I would not be sitting here this morning if it had not been for my home care workers. My older son has respite care. My younger son does not. My older son is in respite for this week. My younger son does not have any respite care. I have a home care worker, who has worked for the family for quite a while, who stayed, looked after him and got him ready for his day service this morning. Home care workers do absolutely fantastic work in holding families together and supporting the person with a disability or the elderly person. They also do fantastic work in allowing, when there is such an absence of appropriate and adequate levels of respite, a small number of breaks for family carers even to get out to do practical tasks such as buy groceries. I am sitting in front of the committee today. I would not be if it had not been for our home care workers.

What home care workers say to me is very much in line with what Ms Cox says in that they do not have the same benefits in a private company they would have if they worked for the HSE. They probably need career progression. Home care work could do with being formalised and professionalised, because these people are professional. Some of the people who work with my sons would be quite young and just out of college. Like any young person, they wish to see they can move forward in their career. We need to put that in place for them. We need to pay them appropriately and make sure they are paid for their transport. They are vital to the sustainability of many families and there really is not enough of them. We certainly need to hold on to the people we have. We need more people to come in to the sector. To do that, we need to change their professional status and bring carers who are working for private companies under the same terms as they would have working for the HSE.

Deputy Pauline Tully

I cannot disagree with anything that has been said. We have heard many of these issues in the committee before, but the more we hear and discuss them and tease them out, the better, to continually raise them and raise awareness.

They do not get the proper recognition or pay and conditions, and that has to change. There is a major shortage of home care workers and assistants. Until the Government alters the procedures relating to how they are paid, how they work, their career progression and so on, that will not change.

Ms Cox mentioned that the income for a family carer is less than €20,000 per year. Is she including the cost of disability when she talks about that figure? The Cost of Disability in Ireland report by Indecon recognised that the average cost for a family with a disabled member is anything from €8,000 to €12,000 per year. I was contacted by a man the other day who said it was €20,000 for his family per year to cater for and look after for their adult daughter because she has complex intellectual disabilities. Another study that was done and presented at the Joint Committee on Autism stated that it costs €28,000 per year when everything is taken into account. That might be because you cannot work outside the home and because the carer's allowance, if you even qualify, is so low. Then one has to pay for services so taking everything into account it came to €28,000 per autistic child. I ask Ms Cox to comment on that.

The Assisted Decision-Making (Capacity) Act 2015 is welcome. We have been waiting since 2015 for the full commencement of that, which seems to be imminent. It is good to recognise that everybody has capacity until it seems to be otherwise. Somebody who presented at the Joint Committee on Autism said that often when a person is non-verbal, perhaps autistic, it is assumed that they have no intelligence, which is just dreadful. Nothing could be further from the truth. Have enough supports been given to family carers to become the decision support person if the person lacks the capacity? That includes financial support and other support.

Ms Catherine Cox

That figure of €20,000 was purely the income coming into the family, so it was not taken into account because a question was asked in our State of Caring report. That is probably why, further down in the report some 23% of people said they were struggling and had cut back on essentials. We did a Care at Home: Costs of Care Arising from Disability survey last year as well and we found that the cost of caring in a home alone is in and around €145 per week, not taking into account other costs. The Deputy can see how nobody could live on €237 per week, which is the carer's allowance. When we talk about carer's allowance reform being required, we want the means test to be abolished but we also want it to be a fair payment. A sum of €237 per week does not cut it in terms of costs.

I refer to the Assisted Decision-Making (Capacity) Act 2015, which Ms Johnstone mentioned. While we welcome it, and like the Deputy, we were waiting for it to be commenced, there are areas that challenge and concern family carers. The Deputy asked if enough has been done to support family carers. My answer is that not enough has been done. Our issue is that we know there are about 18,000 family carers like Ms Johnstone who are caring for somebody with a profound and severe disability and who we know would have to go through the courts to become a decision-making representative for their loved one as soon as the Act commences.

Given that our court system and services are already under pressure, we have continuously asked for a transition period of something like three years, which would allow carers to transition and become decision-making representatives, so that they would not clog up our courts as soon as the Act commences. We feel that is a reasonable ask, given that something similar has been done for the wards of court, which has been given a three-year timeline. That would mean that carers like Ms Johnstone would not be left in limbo until such time as they became that decision-making representative through the courts. We have asked for that and we have asked to meet the Minister, Deputy O'Gorman, to discuss it. We have not got that meeting so I ask the meeting to put that forward and to seek a meeting with the Minister of that issue.

There are other principles within the Act that cause us some concern. One such concern is around a person's right to make unwise decisions. This raises concern with family carers. For example, one family carer told us about her son, who has an intellectual disability and is living with Down's syndrome. As soon as he gets his disability allowance he will happily go into McDonalds, buy one of everything on the menu and eat it all. He will be happy to do that, His mother said that he has done it on occasion and that has been extremely ill as a result. That is an unwise decision, but the consequences of that decision fall back on the family carer because he is sick for days and she is the one who is helping him get through that. However, he has also spent all of his money so he has no money for anything else and he has no money to put towards the house bills either.

There are issues in there that cause family carers some concerns. They can be overcome but it is about supporting and informing family carers. In the survey we did last year, 68% of carers said they did not know about the Assisted Decision-Making (Capacity) Act 2015. They did not know what it meant for them and that is despite the good work that is happening with the Decision Support Service office. I know it has been out there talking about it but carers are still not aware. Family Carers Ireland is running a number of information called Listening to Carers over February and March, in which we will talk through the Assisted Decision-Making (Capacity) Act 2015 and the positive things it will bring to bear. Hopefully, it will also support carers through those challenges. If they have to go to court we will support them in doing that to become decision-making representatives. However, there are areas of concern, which can be overcome if we could get to meet the Minister and if we could talk through them. Hopefully, he could put our minds at ease on some of the concerns we have.

Deputy Holly Cairns

I thank the witnesses for being with us and for their opening statement. I have to admit that from working in this committee and in disability services before you think you have some idea of what it is like but unless you or a family member have a disability there is so much to learn about the constant barriers and challenges. Nonetheless, the UN Convention of the Rights of Persons with Disabilities provides an invaluable yardstick to hold the State and other actors to account in the context of the provision of services and supports using a social model and a human rights-based approach. It also calls for greater awareness of disability matters in communities in order to recognise and value the contribution of disabled people to enriching society, and that is ultimately what this committee is charged with. I re-emphasise how great it is to have the witnesses here and how valuable that is to the committee.

I refer to concerns around the Assisted Decision-Making (Capacity) Act 2015. It is important to elaborate on those concerns, specifically on the concerns with general data protection regulation and transition times for carers to become decision-making supporters or representatives, which was mentioned briefly in Family Carers Ireland's opening statement. Could the witnesses elaborate on that a bit more? Could they elaborate on what information Family Carers Ireland has received? It was said that the information was sparse but I am interested to know what information Family Carers Ireland has received.

Based on what Ms Cox was saying there, I am presuming that in conclusion Family Carers Ireland does not feel well informed but I would like to get clarity on that and on the changes that will come into effect soon. I ask the witnesses to elaborate on what the Government and the Decision Support Service could be doing to help prepare Ms Johnstone and other carers, and Family Carers Ireland. It is such complex legislation, and it was a steep learning curve for me when we had the debates on it.

Some of us were on the Committee on Children, Equality, Disability, Integration and Youth as well as being on this committee and throughout the process it was an exercise in challenging all of our beliefs about things. It is so complex and even though we might talk about the example of somebody going to McDonalds there is also a realisation that people without a disability often make decisions that are unwise. People might spend their money and have nothing left. We all do these things and we have the right to do that. That debate brought all of these aspects into our discussion and that was valuable. That took place over a month of looking at and researching different things. It is so damning to hear that families and individuals then do not have information about what is coming down the line. This will be a shift and I am interested to hear a bit more about what information Family Carers Ireland has received and what the Decision Support Service and the Government should be doing to try to provide more information.

Ms Catherine Cox

To be fair, the decision support services have engaged with us. We have met Áine on a number of occasions. This legislation will be positive for the majority of family carers. The group that we feel will face the most difficulty comprises the 18,000 people who care for people with profound disabilities and will have to go through the courts. In terms of being wellinformed, the court rules for this legislation have not yet been published. When we ask when they will be, we are told it will happen as soon as the Act commences. There will then be a rush for family carers to see what they need to do to get to the courts. If those rules could be published sooner rather than later, it would help.

The GDPR issue is a big one. What would happen if, God forbid, something happens to Evan or Daniel and there is a medical emergency, and because of the backlog in the courts, Ms Johnstone still is not the decision-making representative on paper? She has to go through the courts. What are Ms Johnstone's rights in terms of information? Can a doctor share information on Evan with Ms Johnstone if her status as the decision-making representative is not in place? Those are the kinds of worries and concerns that family carers such as Ms Johnstone have. We need clarity around that issue. That is where the transitional period would help so that in that time, the carer is not in limbo and knows he or she will be treated as a designated representative until such time as they can go through the courts system. That would be helpful.

The Deputy asked what information Family Carers Ireland has received. We have probably received the same information as other providers. We know the legislation and have examined it in depth. However, things such as the court rules that have yet to be put in place cause concern to carers.

Ms Jane Johnstone

I will add to what Ms Cox has said and speak to my concerns as a carer. On the GDPR issue, I manage an individualised budget for both of my sons, which I get from the HSE. I get a certain amount of money over a 12-month period. There is both core funding and an individualised budget. From that individualised budget, I organise home supports and respite for my sons. I also do all the invoicing, booking and purchase orders. It is like running a little business but it works well for a family like mine. We are a one-parent family with two men who have significant needs. That is of concern to me. I feel I am in limbo when it comes to the running of the individualised budget.

Ms Cox mentioned attending at accident and emergency departments. I also worry about the issue of consent. Evan, my older son, is non-verbal so he cannot give consent. If he needed a medical intervention, where does that leave both of us? How would that impact his health? My younger son, Daniel, who is 18, has language. He would not have the ability to carry on a full conversation but he can make decisions, which I have always empowered both of my boys to do. If Daniel were in hospital and a medical procedure were to be suggested, he would say "No", which returns us to consideration of unwise decisions. Those are some of my concerns.

There is a lack of awareness. As Ms Cox said, 68% of the family carers we surveyed said they were not aware of the legislation. Many of my friends are carers and had no idea there was such legislation. We need to address that issue and get clear communication out there. Being a family carer is a very busy and often stressful life. We do it because we love the people for whom we care. There is not a thing in the world we would not do for them. However, we cannot deny it is often a very challenging life. The last thing we want to do is to put additional stress on people who are often doing their best to hold things together. It is important that they are supported through that. We in Family Carers Ireland will do everything we can to support family carers. However, we need the State to help and support them, and to ensure that no additional stress is caused.

Ms Cox spoke about the transitional piece before we can get to the Circuit Court to become decision-making representatives. There is a transitional piece around allowing us to get through that and to be able to make informed and positive decisions for our loved ones who are not in a position to make them for themselves. That space is very important.

Deputy Holly Cairns

I have one final comment rather than a question. It sounds as if there is a real need for an information campaign for individuals and families around the logistics of this when the changes come in. Particularly with regard to the courts, if there is going to be a backlog, what situation will families and individuals be in? That is the information we really need.

At a recent meeting with the Minister, either at this committee or the Committee on Children, Equality, Disability, Integration and Youth, we talked about the situation in the Circuit Court. It is not the case that the Courts Service keeps a record of every case, in general. How will a standard or precedent be set? Is there scope for a situation to arise that the designation as a decision-making representative would depend on where one lives? That would not be right. All of those things need to be fleshed out better. More information needs to go directly to the people who are affected.

Ms Jane Johnstone

I absolutely agree. Those are exactly the things that can cause stress to people who are already under immeasurable pressure. People need knowledge about what is happening and vital things such as how long they might be waiting and what happens while they are waiting. Those are the biggest concerns to family carers. Those carers want their loved ones to make decisions and to live a full and equal life. That is what we have always been about. It is scary that we do not know what happens while we are waiting.

Deputy Holly Cairns

There is uncertainty.

Ms Jane Johnstone

It is vital that is addressed.

Ms Catherine Cox

There is also concern around the cost for family carers to go to court. They must also provide annual reports and need to know what that involves. The legislation states that if the decision-making representative is not the family carer but is appointed by the decision support services, they will be paid their costs but the family carer will not. On top of the challenges, there are also those kinds of issues that have not been clearly resolved and are causing additional stress to family carers.

Senator Erin McGreehan

Our guests are very welcome. It is a great education when we get to hear from family carers. I am not a family carer and do not have the lived experience so these conversations are beneficial. It a means of articulating what we want to advocate.

Deputy Cairns spoke about a few issues I was going to address in my questioning. We are pulling back. Family carers need support to deal with the new era into which we are moving. We all want to empower and support our loved ones with disabilities. I am hearing that carers are disempowered because they have not been given guidance or knowledge as to how, in practical steps, to work through the legislation. They were given a heavy piece of legislation. All of us who worked on it during pre-legislative scrutiny struggled with it. I was changing my mind or going from one thing to another almost every day. It is a lot to expect of family carers when they are already juggling so much. Ms Johnstone has said she is the financial manager for her household and is dealing with invoices.

She is dealing with so much. We are asking an awful lot of family carers without providing practical supports. I have had meetings with CHO 8 on how it will work through all of this. It is almost waiting as it can only plan for so much because then it is in the hands of the courts. It can only work through so many of the situations or scenarios that it knows about because the litigation could be overturned or change and the precedent could change. I do not have a question apart from asking what the committee can do. We are doing an injustice to carers and to those who are being cared for if we do not empower carers to deliver the proper will and preference for which we all advocate and guide the carers in how to derive that will and preference as a supporter of the decision. What supports do we need? What answers do we need? The carers clearly need a meeting with the Minister, Deputy O'Gorman. Perhaps we can write a letter through the Chair to request that meeting. We need a guide and we do not have one. Do the witnesses have other fears? Are there definite requests that we can make? We do not yet know the legal or litigation answers.

Ms Jane Johnstone

There are a lot of unknowns. For any of us unknowns cause a lot of stress and when it is someone's life and soul it is more so. The past 22 years of my life have been completely dedicated to my sons. They are such a part of me and I am such a part of them. We appreciate the opportunity to speak to the committee. I can see that members want to listen to us and to family carers on how we can negotiate this together. At the best of times family carers can feel very alone and very isolated from society. If it were not for people such as Ms Cox and Family Carers Ireland it would be even more so. With all due respect to the committee it has been very good in welcoming us here and I appreciate that Senator McGreehan has even asked the question as to what the committee can do.

Family carers may not even have the time to sit down and read legislation never mind process it in our minds and then apply it to our own situations. I know that some people will say they cannot think about it because it is too scary but it is coming down the line and it will impact in their lives. We need clear information on the Act for family carers. Family Carers Ireland will do this and we would love the input of committee members, even with their constituents. We need something that is clear and concise that is easy to read and easy to understand, bearing in mind that these people are already very stressed and very busy. If carers are given the information they will be able to apply it to their own life circumstances and the people they are caring for. We are heading into an unknown after this. Communities, society, the political system, Family Carers Ireland and carer such as myself all need to come together. It is a powerful piece of legislation and we desperately want it. Senator McGreehan asked whether there is a feeling of carers being disempowered. I would have to say that there probably is. I certainly feel it. A lot of it is perhaps based on the fact that I do not have the knowledge and that there is a gap and we do not know how it may change in future.

There are unknowns with regard to physical issues. My son Evan is 22. When he started walking, when he was a year and a half, my late husband and I put a fence around the house so that he would not get out onto the road and be killed. We live in rural County Wexford. That fence fell down last year and I put it back up again. He is 22 and he would still go out onto the road. It is a country road and he would be gone in a minute. Am I impeding his decision to go into the front garden and go out onto the road? We are back to the issue of unwise decisions. He would be killed. I am questioning myself as to whether I am doing something wrong by keeping my front door locked because I am afraid somebody would get out. It almost brings in a little bit of guilt. I question things that I always thought I did in my son's best interests. There are all of these grey areas.

Ms Catherine Cox

That says it all. That is how so many carers are feeling. Senator McGreehan has asked what can be done. Certainly we could have a meeting with the Minister. We would like to see what the court rules would entail and what a family carer will have to do to go to court. Would it be an ex parte form? Would it be a simple form to be filled in? We will support them through Family Carers Ireland. The UK has a number of forms. How will the criteria be determined as to whether a person needs a decision-making representative? All of this is in the ether. The Decision Support Service has done amazing work in bringing what awareness it can to the public but it does not have the court rules either. We have been calling for them. I imagine the Court Service and the legal system are also wondering where they are. We need to see them. A meeting with the Minister would be extremely useful so we can put these issues to him.

Deputy Emer Higgins

I thank the witnesses for coming before the committee and I apologise for missing the opening statements as I was attending the housing committee next door. I caught the end of Ms Johnstone outlining the reality of caring for her son, what it looks like on a day-to-day basis and how sometimes she has to make choices on behalf of her son. So do many other people who care for others in the interests of their safety. As Ms Johnstone said, there are grey areas. This story needs to be told. Family Carers Ireland has said it would like further engagement with the Minister directly on this so it can get that level of interaction. I am certainly happy to support the request for a meeting. Members of this committee feel it. I am a member of five committees and this is the one committee where people come in and share very personal lived experiences. It is probably in this forum that laws, regulations, attitudes and culture can be shaped by this sharing. I thank Ms Johnstone and Ms Cox for coming before the committee to share with us. This is how we as a committee will help to inform legislation and regulation.

I congratulate Ms Cox on taking on the challenge of a PhD. I read the statements in advance and I understand-----

Ms Catherine Cox

That is Catherine Gallagher. She will come before the committee at 11 a.m. I would love to be doing a PhD.

Deputy Emer Higgins

I would too. I thank Ms Cox for setting me right on that. I have a question for Ms Johnstone on how we can help Family Carers Ireland to achieve a meeting with the Minister and brief the Minister in advance to make sure he comes with an open mind and knowing exactly what carers are going through.

Ms Catherine Cox

I will jump in there because we have written to the Minister. We have asked all of these questions. We have asked for a meeting. His office has responded. It has put some of our less important concerns to rest but on the issues of the court rules and the transition period we have not had a response. This meeting would be crucial.

Deputy Emer Higgins

That is understood.

Ms Jane Johnstone

I am sorry to say it again but the transition period could take years. It is a major concern, particularly for the 18,000 people, including one of my sons, who have been identified as being completely non-verbal with a profound intellectual disability and autism. There are obvious implications of being in a desert and not knowing where we stand with regard to even administering his individualised budget. What do we do if he needs a medical procedure?

Who gives consent and all of those things? They are serious issues in themselves. As well as that, I can see myself and I have been worried about this for a long time. We have a lot of stresses as it is. That meeting with the Minister that Ms Cox mentioned is crucial from his point of view as well as from our own in order that we can reassure myself and the other 18,000 people who will be caring for people like Evan that there will be solutions to all of these issues because we will really need them.

Senator Eileen Flynn

I will come in very briefly. I did not table a question but I was listening to Ms Johnstone on the way in. I know the work that Family Carers Ireland has done for many years and the importance of caring for somebody at home, even somebody who is dying. From my experience, there are certain ways to become a carer. None of us plans to care for somebody with a disability or a sick person. In my personal opinion, the application forms to apply to be a carer - the question of who can tell a person whether they get to be a carer - are too much for many people.

For the sake of the committee, could we agree to write a collective letter to the Minister to see whether he can meet Family Carers Ireland and representatives of carers in Ireland? That would be a brilliant starting point for this committee. Like other members in this room, I would not be 100% educated on the subject. Really, even though someone is caring for a person, he or she is not that person's decision-maker. As well as that, independent living is an issue. Some people may take advantage of caring for somebody, for example when we start to talk about money. I do not know how to put it in the right way, to be honest. How do we deal with those kinds of situations? I know it is something Family Carers Ireland is concerned about as well.

Ms Catherine Cox

It is a good question. With the carer's allowance, we would engage quite often and very regularly with the Department of Social Protection. The Minister, Deputy Humphreys, has committed to looking at reform of carer's allowance, which we would welcome.

To go back to what I said earlier, we want to see carer's allowance as a non-means-tested payment. It should be based on need. There is then a concern that people could defraud the system when making a claim, but I would say that very few people could do that because there would still be medical criteria. People would still need to have medical reports from consultants and doctors saying that the person requires full-time care. A person has to be providing 35 to 40 hours of care per week anyway. Most carers like Ms Johnstone provide far more than that. There are other checks in place that would assure there would not be fraudulent claims. That would not be an issue.

In terms of somebody like Ms Johnstone who has cared for her boys for all their lives, the amended Assisted Decision-Making (Capacity) Act means there are three types of support a person can provide to a loved one. A person can be a decision-maker assistant, co-decision-maker or a decision-making representative, DMR. That last one applies when it is found that, for example, the person has a profound disability and cannot make certain decisions for himself or herself around finances or health. While Ms Johnstone has done that for all of her sons' lives and will continue to do so, in order for her to be recognised as that DMR and treated as such - for example, for information to be shared in a medical crisis or for financial information to be shared - she will have to apply and have it agreed that she is their DMR. She will continue to do what she has always done but she needs a court order to say that people from banks and medical people can talk to her because she is the designated DMR. That is why the new legislation is important. As I said, that legislation would be very positive for many other carers but there are also some concerns that we need to address.

Senator Eileen Flynn

Okay. I thank Ms Cox.

Chairman

I thank the witnesses and members very much. On Senator Flynn's suggestion, we will write to the Minister and try to have that agreed for next week. It might be helpful for the letter that Family Carers Ireland wrote to the Minister to be circulated to the team so that the members would have it and we would understand the questions and issues. That would be helpful from our point of view and maybe from that of Family Carers Ireland as well. We will do that.

Ms Catherine Cox

It is something that comes up most often with former carers. Somebody who was caring will often find that their financial income goes down when they are no longer caring. We provide support programmes for former carers. That might include someone who wants to get back into the workplace. We have a working care out programme which is funded through the Dormant Accounts Fund. It supports carers who want to do a CV to show what skills they have developed over years of family caring. We also provide really good training programmes for family carers and former carers free of charge. We also provide support for employers who are employing a carer who is juggling paid work with care work. We come across the group of people mentioned by the Deputy. There is no doubt that they incur definite costs when they are going into the nursing home, sometimes twice a day. We have never thought about the idea of another payment, but it is something we can certainly think about with our policy and public affairs manager, Clare Duffy. We can look at that and see if it is something we should address because the Deputy is right when she says that there are costs involved. I suppose is so difficult to get supports for the carers who are doing it full-time that the group of carers who are doing it while juggling it with paid work often get left behind. That is not fair and it is something we can certainly consider.

Chairman

I thank Ms Johnstone and Ms Cox and ask them to keep up the good work. I thank them for the personal information this morning. It is hugely important. The more information we have, the better we can do. We will follow up on a letter with the Minister to try to get that meeting with Family Carers Ireland.

Sitting suspended at 10.48 a.m. and resumed at 10.59 a.m.

Chairman

I welcome Ms Catherine Gallagher.

I remind witnesses of the long-standing parliamentary practice that they should not comment on or criticise any person or entity by name or in such a way as to make him, her or it identifiable or otherwise engage in speech that would be regarded as damaging to the good name of a person or entity.

If directed by the Chair to discontinue such remarks, it is imperative that such direction is complied with. We will take the opening statement of Ms Gallagher as read due to her other commitment. We will go straight to members as per the original rota. I call Deputy Dessie Ellis

Deputy Dessie Ellis

Ms Gallagher went to college. What were the main challenges faced? Accessing education for people with disabilities can be difficult. Going to college is a fantastic achievement for anyone but even more so for someone with a disability

I do not know whether she drives or uses the bus but I am sure she will be aware that many bus services now are wheelchair accessible but there is often only one spot for a wheelchair, which is an issue. I am sure she has heard a million times that it is something that needs to be looked at in the future when these vehicles are designed.

I imagine that if she was to go out for a night that getting a taxi late at night would be a huge challenge. It can be a huge challenge for anybody, let alone someone with a disability. The taxi service in Dublin at peak hours and at the weekend is problematic. Does she find that to be a major issue for people with disabilities?

On the issue of finance, we discussed earlier how much carers earn and how much people with a disability receive. Will she elaborate on what she sees as the shortcomings in that area?

Ms Catherine Gallagher

Before I answer the Deputy's questions, which I made a note of because they are all relevant and pertinent, I just want to thank the committee. I appreciate being facilitated today. Unfortunately, my work commitments changed at the last minute. I am teaching this semester for the first time and the joys of university timetabling were out of my hands, and my teaching schedule and my roster changed at the last minute. Unfortunately, that is why I have to leave at 11:45 a.m. to make my next class. I am racing around the campus today but this is what we have to do.

I am still in college. I am a PhD student in DCU. I did my undergraduate degree in DCU in journalism. I then did my master's in political communication in DCU and now I am in the middle of my PhD. I am a full-time PhD student in the school of communications and I am researching the media response to Covid-19 in Ireland, which is keeping me very busy.

That said, I do recognise my privilege in that I am educated and I have been supported by different factions and people in my life to be able to get to this stage but I have done all the hard graft myself. I am pretty confident in saying that. Bearing in mind people might not be aware of where I am from, I am from Achill island in County Mayo so I am from the most westerly point, pretty much and I moved across country to Dublin. I am based not too far away from the Deputy and I might bump into him one of the days. I am living on the campus as well. That is my setup.

Gettinging to college, even though I have gone through the stages and worked my way up a little bit, from an education point of view, I still think the leaving certificate was probably one of the toughest years for me. The pressure of that year was enormous. That transition is nearly something one could have another committee meeting for. The transition periods of life, leaving the family home or leaving secondary school or leaving primary school, can be incredibly stressful for people, as they were for me.

One of the most difficult things for me coming to college was securing my personal assistant, PA, hours. These were for my college time, helping me through the logistics of the college day. Within the university, I did not face much resistance to getting that support. However, getting the out-of-hours support from the HSE and private service providers and getting those hours approved by my local health board in Mayo was an ordeal. That is how it often works - your hours get approved in the county that you are from and then you hope to get them transferred to the county where you are studying or or where you are going to move to. Getting those PA hours helps with the personal care elements of the day such as cooking, cleaning, grocery shopping and ironing. These are all things that I need help with and this is how I live independently. There is a misconception that living independently means that one can do everything oneself. The independent living concept or belief system means you have choice and autonomy over your life. It that means that you have a bit of assistance or some PA hours but that is still living independently. You are still living independently of your family. There is a bit of a misconception about that. Securing more PA hours was probably one of the most stressful things in my earlier years in higher education. I was originally only granted 11 hours by the HSE and even at that, I was told that I was very lucky to get that. I remember the day we were told that, my mum and I were in a car park somewhere in Mayo. These hours were the only way I was going to be able to leave Mayo, and I had my sights set on this course for a long time. I originally wanted to be the other kind of a doctor, not a doctor of philosophy. I initially wanted to be a medical doctor for a long time. I wanted to work in orthopaedics first but came to the realisation that, unfortunately, that was not going to suit my lifestyle is how I would put it. Journalism was the next choice and I recall when we were told about how lucky we were to get those 11 hours that I broke down crying in the car in the car park. Was this what my life was reduced to that I am being made out to be kicking up a fuss when I am simply trying to live with a bit of dignity? This is still the case today, unfortunately. This is reality. The logistics of higher education for people with disabilities is something I focus a lot of my time on when I talk in spaces like this.

My time was mostly positive but there were challenges, particularly when I went into postgraduate education. For levels 9 and 10 for PhD, there are statistically not many disabled P Ed postgraduate students in Ireland. This is something I could talk all day about but, unfortunately, we do not have the time. However, the committee should keep an eye out for a group called the national disabled postgraduate advisory committee, NDPAC, which is a bit of a mouthful.

We have met with the Minister for Further and Higher Education, Research, Innovation and Science, Deputy Harris a couple of times. We are a group of disabled postgraduate students or disabled academics who have finished their PhDs and we are focusing much of our personal time on this. A conference is coming up towards the end of February. I am more than happy to email the details to anyone interested. It is a free online conference. It will be a couple hours on 23 February. It is involve NDPAC, the Higher Education Authority, HEA, and the Department of Further and Higher Education, Research, Innovation and Science. There are not many of us in particular on the postgraduate side of it and there are not many disabled academic staff. This means that we are losing thousands of rich research items, theses and contributions because of the barriers. I wish I could elaborate more on that, but I am more than happy to speak to anyone following the meeting. I am more than happy to elaborate further subsequent to this.

The issue of transport is pertinent. I am not a wheelchair user but I have limited mobility. One of the things I am noticing about buses, which has been in the news, is they are not turning up. Someone in my position plans their night out, meetings or wherever they are going to around when they are expecting a bus. It takes me a little bit longer to walk up to the top of the Ballymun Road to get my bus into town or Drumcondra or wherever I am going. It is often the case that the buses are not turning up. I usually allow myself ample time but where I might expect to stand for perhaps five or ten minutes, sometimes I am standing for 20 minutes or half an hour. This is particularly an issue where there is no place to perch and you are standing on your feet. This has been an issue and I am not the first one to raise it.

There is an issue of not enough wheelchair accessible space as well. Unfortunately, you can come across uncomfortable – "confrontation" is perhaps too strong of a word – exchanges with people who have buggies and prams. If the bus is particularly full, I cannot go up the stairs. I have never been upstairs on a Dublin bus. It is just not something I will ever do. Sometimes I use the accessible chair that faces towards the back of the bus. My impairment is not visible to some people whereas it is to others. It depends on how observant they are. We know in our daily lives that people are focused on what is in front of them, which is usually a screen. Since I was very young, my dad has told me to always avoid rush hour and that is what I have to do. I do not go on the bus at rush hour. I do not know where that will end up when I eventually, hopefully, get to a stage where I am working full time and have to commute. At the minute, I am living very close to my research spaces so I do not have to commute every day. However, that is an issue.

I was in London for the first time in August. I did not go near the underground but I used the buses. I found even that the buses were easier to get on and off. They were closer to the pavement and easier to step onto. In addition, they were much more frequent. Buses ran every two or three minutes in and around Liverpool Street. It was amazing. The connectivity there, even just for buses, was super. The taxi service was as well.

Transport and housing are two issues for disabled people in a position to emigrate. Transport is nearly up there on par with quality of life and housing because it can make and break your day. In the UK - I could be wrong, but I do not think I am – there is a rebate system for taxi receipts for disabled people. I used to have a reputation years ago among my friends for being fond of the taxi apps because I found getting around Dublin stressful. I have become more confident with using the buses but it is difficult when there are ghost buses and a bus will not turn up. For the past couple of weeks, I have arrived a half an hour earlier than I needed to. I took an earlier bus because I was afraid that the one I was expecting would not come. I am losing time waiting.

With regard to taxis, it has been incredibly challenging coming home on a night out, like anyone else, on a Friday or Saturday night. It means that I am cutting my nights short when perhaps I would like to be out until the wee hours. I am cutting my night short to try to get the last bus home. That is impacting on my social life. I am hoping that the last bus turns up. It is all connected.

With regard to people with mobility aids or wheelchair users. Even though accessible vehicles are always driving around, trying to get a taxi driver to actually take you can be a challenge. Sometimes, taxi drivers start the meter when you are kind of disassembling a chair or getting into the vehicle or whatever it is even though the vehicle has not left. It might take a wheelchair user-----

Chairman

There are 25 minutes left in the slot for Ms Gallagher. We have three members who would like to ask questions and who are anxious to tease them out. I am reluctant to intervene because witnesses give information here and we want the information from them. I might take the three members who are with us at the moment together and then give Ms Gallagher an opportunity to respond in the time left, if that is agreed with members.

Senator Fiona O'Loughlin

I have been blown away by the presentation from Ms Gallagher. I thank her for sharing all about her life with us. It is something that we are all sensitive about. We need and rely on people like her and family members to talk about personal and sensitive issues in their lives in order that people have an understanding of what it is like to live with a disability. I am conscious of that. I have a brother at home who is my beating heart in many ways and the heart of our family. Cathal is 46 and has Down's syndrome. I am always careful. I want to be conscious of his privacy and his dignity in anything that I say. It gives me a different and more understanding perspective of the challenges that face people living with a disability.

I was quite surprised by the report the National Disability Authority, NDA, did in 2017. Some 46% of respondents agreed that people with all types of disability can participate fully in life. In one way, it is good that there is that positivity that barriers are broken down in the minds and hearts of people and they want to feel that those with disability can participate fully in life. However, when we then look at all the statistics relating to employment opportunities, education opportunities and how people can live their life with dignity, choice and autonomy, that is certainly not the case.

Ms Gallagher spoke about how she was told she was lucky to be able to get 11 PA hours. That is shocking. First, it should not be a question of luck. Second, it is quite condescending to say that.

It is condescending to say that someone is lucky to have 11 hours. That is completely the wrong attitude to have. Even when talking about public transport, I know Cathal has to rely entirely on family members to be able to have any type of a social life or to get to work. While accessible public transport is important for those who live in cities and towns, we live in a rural area which has no access to any type of transport, yet people rely completely on it. The Local Link in some areas is doing good work but we need to do far more. I did some work for the Special Olympics. Athletes trying to get to training and to go to social events were at a significant disadvantage and were completely dependent on people.

I have one or two questions. It is interesting to see the research from Australia about its campaign, Every Australian Counts, where people like Ms Gallagher spoke in a very personal way. That is not always easy but these accounts are important and resonate with people. The Australian people, as a body, agreed to pay an extra 0.5% in tax to enable people with disabilities to live with dignity and have those choices. That is interesting. I would like to know Ms Gallagher's opinion on that. It could be something that we could do in Ireland.

I thank Ms Gallagher for the invitation to the conference on 23 February. I would certainly like to attend.

My other question is for Family Carers Ireland. I completely agree with what its representatives said. The women's caucus has undertaken research on a new charter for carers. We hope to have that within the next month or so and have a debate in both Houses of the Oireachtas about how we support family carers because that is all-important. I would be interested in hearing about the cost of caring, other key issues that family carers experience, recommendations that they would make, and their perspective on how carers meet their obligations as decision supporters under the Assisted Decision-Making (Capacity) Act. I would be interested in the response to those questions.

Deputy Pauline Tully

I will be brief because I realise we are close to the end of the meeting. Ms Gallagher addressed many issues in her reply to Deputy Ellis, as well as many of the issues that are raised in this committee on a continual basis. I congratulate her on the work she did in getting the law changed so that PhD students could keep their stipend with their disability allowance and medical card. Many people feel they cannot enter employment for those very reasons. They feel they would lose certain things. It is not even just the disability allowance or the blind pension. The medical card is the big one. They do not want to lose the secondary benefits. Does Ms Gallagher envisage a change coming that would allow people to hold on to those benefits, at least for a period until they see that employment has worked out? I hear from artists and musicians, in particular, whose work is often done on commission and is therefore not a steady income.

From reading Ms Gallagher's statement, I feel she is slightly frustrated with this talk of creating awareness all the time. I had not been on this committee for long when I said to someone that it is like disabilities are a new phenomenon. We have obviously always had disabled people. Much has happened over the years but many things still have not changed and it is frustrating. We talk about housing and transport as the two big issues, but this spans a range of issues.

I congratulate Ms Gallagher on everything she has achieved and on her advocacy. I wish her the best of luck in her future career.

Ms Catherine Gallagher

I thank Deputy Tully.

Deputy Holly Cairns

I will be brief. I thank Ms Gallagher for taking the time to share her experience and expertise with us. Her contribution when she spoke in September really stayed with me. I do not think I am the only one who felt like that. I thank her for again raising the issue of individuals and families being forced to share their stories to access basic services that they are entitled to. Ms Gallagher highlighted that the language about disabilities is still medicalised and pathologised. Will she elaborate on that point and its impact? Is she aware of ways in which we can challenge these antiquated and harmful practices?

The committee previously heard about the need for a significant cultural and attitudinal shift as part of a larger system change. It is clear that there is a need to empower DPOs in this shift. Does Ms Gallagher have suggestions for the committee on ways in which we can empower DPOs?

Deputy Rose Conway-Walsh

I thank the Chair for letting me contribute because, as Ms Gallagher knows, I am not a member of this committee. It is great to see Ms Gallagher. I listened to her presentation from the office. Well done to her. Like Deputy Tully, I thank Ms Gallagher for all she has done, particularly with regard to Catherine's law. I have a question on Student Universal Support Ireland, SUSI, and the discussion of extending it to part-time students. How important does Ms Gallagher feel that is for students with disabilities to be able to access both further and higher third level education?

Ms Catherine Gallagher

I thank members. I could probably stay on until 11.50 a.m. if that is helpful. I will address this issue further but will briefly answer the question on finance and disability. The cost of disability or the disability tax is huge. Members are probably aware of the cost of disability report that was published in December 2021. It found that the average additional cost of just being disabled or having extra layers of consideration for either an individual or a family can range from €9,000 to upwards of €16,000 depending on impairments, conditions or what one is dealing with, bearing in mind that the full rate of disability allowance is €208 as of the last budget, which amounts to about €10,500 a year. That is huge. I know we have a cost-of-living crisis. This affects disabled people and, often, their families, particularly when there is a disabled child involved. When I say "disabled", I am coming from the social model of disability, that we are disabled and disability is not a bad word. Being disabled is nearly a political statement. Saying that one is disabled is more of a verb than a noun. I am saying that I am impacted by things that can be changed but are beyond my control, in case there are any queries on how I am phrasing things. I am aware that we are all dealing with a cost-of-living crisis but disabled people have always lived in a cost-of-living crisis.

The barriers to employment are huge. It is a poverty trap. People think they would love to go for a job, whether it is part-time or full-time, but they will lose their secondary benefits. That is huge. We are losing out on so much talent. Sometimes, when I think about this for long enough I get really upset. People talk about the talent pool but we are not tapping into the full talent pool. How can we? People are petrified of Revenue and the Department of Social Protection. They live their lives in fear. This impacts the private freedom and liberty of how people live their lives. It impacts on who they choose to live with. This is mentioned in the UN Convention on the Rights of Persons with Disabilities. It is not something that we should have to worry about.

If I wanted to move in with my partner tomorrow, his income would be taken into consideration in a means test. I live by myself in an apartment. Just to be clear, we are not living together; however, if I were to move in with him, his income would be taken into account. I am referring to a lump sum. We are not married and do not have children. I would lose everything – a very private, personal part of my life that makes me extremely happy and is really important to me. We are both studying at the minute. We talk about when we would like to make the step of moving in together after our studies, in a couple of years' time. By the time our studies are finished, all going well, we will have been together seven or eight years. That is not something I should even be worrying about. Part of the reason I am breaking my neck to educate and make something of myself is that I hope that when I eventually get a job, I will be able to afford the cost of being in the vessel that I am. There is no guarantee with that. We know the precariousness of academic life and academic careers. I do not know where I will end up. I am keeping a very open mind on where I will go, be it academia or elsewhere. I would like to stay in academia because I feel I can contribute, but that is not something I should even be thinking about. Not many people are aware of that. Ireland is not unique in this regard. It is a matter I think about all the time but it is not something I should ever have to worry about.

The question of privacy and autonomy touches on my point. I might have mentioned during my previous appearance that we have to notify Departments about every decision we make. In my university alone, I probably have to deal with three to five different offices or sections of campus life before even dealing with my housing and finances and so on. The privacy and autonomy element is considerable. Again, this is a matter I will be happy to elaborate on in other forums or at other times.

Living with privacy, dignity and discretion is a privilege. I wish I had it. The whole kerfuffle over scholarship funding, as I describe it, has led to "Catherine's law". Towards the end of my opening statement, I touched on the very intense few weeks I had when I shared my story. Deputy Conway-Walsh was of great help to me at the time. I am in her constituency. Deputy Dillon and Senator Lisa Chambers were also of great help. From a political perspective, it was really interesting. From a cross-party perspective, there was little resistance on the issue. From the three individual Members, and also more behind the scenes, I came across very little resistance. It would make for a really interesting case study on cross-party support, if you were even to consider it like that. I am still appreciative of the help with the legwork.

The impact, on which I have had time to reflect, was huge. Not only was I talking about my experience of being a disabled person, which in many ways I am very open about although I am a little more careful about what I share now, but I was also talking about my finances and financial circumstances. That was such a killer. It was so grim. I do not like talking about money. It is not that I come from a place of money. Maybe it is an Irish thing or the way that I am. I do not ask people the price of a pair of shoes they bought. I do not talk to or ask people about money. It is not a topic I usually go near. Suddenly, it was what I was talking about. I was talking about potentially being on the poverty line or losing out entirely on an opportunity. After that, although I had many amazing opportunities to read reports and speak, including on panels and focus groups, I was catapulted very quickly into doing that kind of stuff more regularly, including voluntarily in my spare time. This year, I have to be really cognisant of my mental well-being because the cracked, fun, creative side of me has taken a back seat. I forgot for a long time that some people actually think I am relatively humorous. Everything was kind of funny. I was talking to somebody the other day who laughed at what I said and I thought that I actually have characteristics that are not just related to all of what I am talking about today. While I am very appreciative of what has been done – I have made some amazing connections and friends – I believe the impact on me has been huge. I am really prioritising bringing the spark back this year as much as I can, given all my other commitments. The impact has been huge and I am very cautious about that now.

On privacy, autonomy, media space and voices, the trajectory up until now, although I still think there is room for improvement, is that disabled people have been spoken about and not spoken to. That has been my life story. We are spoken about as if we are over there. We are regarded as the vulnerable, over there, in a house or wherever. We are regarded as the disabled, the vulnerable or a subsection of society rather than part of human diversity and as people who should be celebrated.

When it comes to representation and the question of whom we are listening to, there are four points I would put to people. I would welcome it if they reflected on them. What has been people's perspective on disability until now? What word would they use to describe disabled people? Until now, what voices have they tended to hear from in their work and personal lives, and obviously in the media, considering that the media are very significant? Who was in the room or virtual room, and who was not? Who do you have? Are representatives of disabled persons' organisations present? Are disabled people there? Who has influence in the room? You can have all the right people at a meeting but some will always shout louder. Some groups have had more of a handle on the narrative for a long time and are uncomfortable when disabled people come into the fold and say what they are experiencing and what it is like from their end. It is about including everyone, not about putting anyone out. It is about giving the lie of the land and stating one's experience. Although you can have all the right people in the room, including a disabled person or representatives of a disabled persons' organisation, what are you doing if what they say is not taken on board? Those are quick-fire questions that I use when speaking in these spaces.

Transport in rural Ireland is a major issue. Some members might have been on their holidays in Achill, where I grew up, and maybe they have checked out our greenway.

I will be in Dublin all of the time now because I am researching throughout the summer but, when I was an undergraduate student, I found leaving my student accommodation and going home to Achill in the summertime really hard because I do not drive. I am working on that this year. It is one of my goals for this year to see that through and get my driving licence. Getting through that will be a whole other thing I will have to figure out. Achill is a place where you cannot get around and have to rely on your family to drop you off to a coffee shop and to pick you up again. There are no real connective links in Achill. You feel like you are a teenager again. It is very infantilising and can get quite lonely. "Disempowering" is probably a very polite way of describing it. You are stuck in the house. My family home is not within walking distance of anything. I am sure this is not just my experience and that older people and others who do not drive have similar experiences. It is not unique to me. I recognise that I am not saying anything new here. That is one of the reasons I decided to move back to Dublin in September. I decided it was time to move back because it was just too quiet. I could not buy the paper, a magazine or a bottle of something. I would have to ask my mum to get me a bottle of something to have when I was watching the telly. It is just not nice.

While it may not be other people's experience of personal assistance hours, my experience has been that, if I am in my family home, I do not get hours. That is the set-up I have. For some reason, that is the way it is for me. It is when I am living away from my family that I get personal assistance hours to help me to live independently from my family. That is also crucial.

I have a few minutes left on my end. If I do not have any time left on the committee's end, I hope someone will let me know. The barrier to employment is very significant. Deputy Tully is probably familiar with the Disabled Artists and Disabled Academics, DADA, campaign. Emilie Conway has been very vocal on this. Disabled academics are in a similar boat to disabled artists as regards precarious work. I am not sure it is even possible for researchers to get full-time contracts early in their careers. You go from semester to semester. You might get three months' work here or a grant to a bit of research there. You might get a semester of teaching. It is higgledy-piggledy. That is the only word I can come up with at this moment. The precariousness of work for academics is very much an issue. I am happy to talk to anyone who is interested in this at another stage. Before I forget, I am very happy for the clerk to share my contact details with anyone who wants to get in touch at any stage.

On the medicalised model of disability and the way we describe things, as I said in my opening statement, words can heal and words can hurt. Things are often said and done with the best of intentions. Last night, I was thinking about how I would describe this. All of my life, I have come across things that have upset me and things have been said to me. People have come up to me at weddings to ask whether I would not think about living with family for my first year rather than living on campus and whether I would be able for it. I got a lot of this the summer before I first started college. I went to two or three weddings and got a lot of it. I would come home and tell someone what I had heard, what I had been told on the dance floor or how I had been pulled aside. I felt like I was the only disabled person in the village. People might feel that they could touch one's wheelchair without asking. For me, the problem is being asked questions on things that are no one's business but mine. The response I get back is that they did not mean it and that the question was coming from a good place. When you have been hearing something for 25 years and are just told not to worry about it because it is coming from a good place, something has to give. I cannot have another 25 years of it. It takes an awful lot of mental energy and energy in general to be considerate. I would like to think that I am a considerate person and that I do not jump the gun but it is tiring and infantilising. That is probably the best word.

The best way to counteract this or to bring about cultural change is to link in with disabled persons' organisations, DPOs, because this is something on which they have consultations and working groups. It also means that you are talking to a group of people rather than one or two so the emotional labour involved in talking about these things is not so strong. Linking in with DPOs is something I would suggest, as is just thinking about it. Like I was saying, swimming lessons for Johnny is hydrotherapy for Mary. Music lessons for someone is music therapy for another and so on.

There can also be joy. One thing I have been learning about, particularly over recent years, is disabled joy and disabled pride. There is joy in my community and in my experiences. There are many parts of me. The trajectory of the decisions I have made have certainly been partly informed by being disabled. There is no getting away from that. Some of those decisions have been really good decisions for me and really worthwhile. There is joy, craic and laughter. Disabled people and disabled children can have joy. One of the words I have nearly banned from my vocabulary is "battle". I know why people use it and it is a word I grew up with. People talk about the battle, the fight and the struggle. This is all very true and I am not dismissing it but, when you think about it, why are people using that language of war, although I am not saying they should not? Why are people using these really strong words? It is because the root causes lie in the system. It is not the fault of the family, the disabled child or the disabled person. It is the way things have been done. I do not know about the members, but when I am going about my daily life, I do not want to feel I have to describe just getting a bus as a battle. Why am I describing it in that way? It is because the root cause is not my issue. I know I am nearly out of time. People resort to things out of fear and desperation.

I spoke about human interest stories in the media the last time I came before the committee so I will not elaborate too much but we should be conscious of the implications of families sharing stories of children. As I said in my statement, I am not blaming anyone. I believe that is really clear so I waste time saying it.

The implication of that, however, is that it is creating a digital footprint that cannot be taken away. Articles in which I participated three or four years ago will be available on Google forever even though I wish I never did them but at least if I Google my name, there is nothing from when I was six or seven years of age. There are no pictures me or anything like that. I am not blaming anyone. Why do people resort to speaking to the media? They do so out of pure desperation. We should not think it is a normal thing to do.

I thank Deputy Conway-Walsh for her question on SUSI and part-time study. It is an important issue. Part-time study is also important for parents and care givers, not just for disabled people. It is an issue, too, for postgraduate and PhD level research. It is very difficult to get scholarship opportunities for a PhD on a part-time basis. As I stated, when we do not facilitate, we are losing out on the talent pool. By not allowing more opportunities for part-time study and research, one is missing out on the talent pool.

My needs and those of other people are not special. My needs never have been special. I am not a special needs individual. My needs are particular and clear and when they are facilitated I have the opportunity to live my life with peace and dignity and might not have to worry about with whom I live and the implications in that regard for my finances. This is run of the mill stuff. None of it is new to me but I am aware that I discuss it regularly. I speak to disabled people about this quite a lot.

Disabled people are looking for a foundation; a basis for living life with a bit of discretion and dignity. They are looking for the foundation to have an ordinary life. That needs to be facilitated, supported and understood. Our worth needs to be understood. We should not feel that we have to remind people that we are worthy of being in the classroom or other room, or being the teacher. One of the things I am doing in my teaching is letting students know that their tutor or lecturer is very cognisant of accessibility and to let me know if they have any queries in that regard. I never had that experience as a student. We are seeking to be supported to live an ordinary life. Once that foundation has been provided and we have the tools, ability and understanding to have an ordinary life, it is up to us to make it extraordinary. I will finish on that note. I thank members for their questions and for bearing with me.

Chairman

I thank Ms Gallagher. She is truly an inspiration. There is so much that has been said and done. Much of this comes down to attitude. People's attitude is one of the big issues we are facing. I sincerely thank Ms Gallagher for her contribution. I thank members for their dedication through both sessions and their continued work on the committee. I thank the secretariat for all the work they do behind the scenes.

The joint committee adjourned at 11.55 a.m. until 9.30 a.m. on Thursday, 9 February 2023.

Joint Committee on Disability Matters debate - Thursday, 2 Feb 2023

Living with a Disability: Discussion

Ms Jane Johnstone

Ms Catherine Cox

Ms Catherine Cox

Ms Jane Johnstone

Ms Catherine Cox

Ms Catherine Cox

Ms Jane Johnstone

Ms Jane Johnstone

Ms Jane Johnstone

Ms Catherine Cox

Ms Jane Johnstone

Ms Catherine Cox

Ms Catherine Cox

Ms Catherine Cox

Ms Jane Johnstone

Ms Catherine Cox

Ms Catherine Cox

Ms Catherine Cox

Ms Catherine Cox

Ms Catherine Cox

Ms Catherine Cox

Ms Catherine Cox

Ms Catherine Cox

Ms Catherine Cox

Ms Catherine Cox

Ms Catherine Cox

Ms Catherine Gallagher

Ms Catherine Gallagher

Ms Catherine Gallagher

Joint Committee on Disability Matters debate -
Thursday, 2 Feb 2023