Oireachtas Joint and Select Committees
Thursday, 11 November 2021
Joint Oireachtas Committee on Disability Matters
Aligning Disability Services with the UN Convention on the Rights of Persons with Disabilities: Discussion (Resumed)
Apologies have been received from Deputies Murnane O'Connor, Tully and Wynne and Senator Higgins. The purpose of the meeting is to discuss aligning disability services with the UN Convention on the Rights of Persons with Disabilities, UNCRPD, in consideration of acquired disability. On behalf of the committee, I extend a warm welcome to Ms Mary Farrell and, from the Irish Heart Foundation, Mr. Chris Macey, director of advocacy and patient support, and Ms Fiona Bardon.
I remind members that they are only allowed to participate in the meeting if they are physically located in the Leinster House complex. If members are joining the meeting remotely, I ask them to confirm they are on the grounds of the Leinster House campus prior to making their contributions. For anyone watching this meeting online, the witnesses are accessing the meeting remotely. Due to these unprecedented circumstances, I ask that everyone bear with us should any technical issues arise.
Before we commence formal proceedings, I must begin with some formalities and advise our witnesses on the matter of privilege. Witnesses are directed that only evidence connected with the subject matter of these proceedings is to be given. They are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person, persons or entity by name or in such a way as to make him, her or it identifiable. I wish to advise witnesses giving evidence from a location outside of the parliamentary precincts to note that 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 another jurisdiction should also be mindful of its statutory regime. If they are directed by the committee to cease giving evidence in relation to a particular matter, they must respect that direction.
Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise, or make charges against a person or persons outside the Houses or an official either by name or in such a way as to make him or her identifiable.
Ms Fiona Bardon:
Dia dhaoibh. We have all seen the advertising campaign “When stroke strikes, act F.A.S.T.”, but why is it that we must act fast? When a person has a stroke, brain cells are destroyed. Therefore, it can affect them physically, cognitively and emotionally. Some people are left unable to move limbs or have balance or co-ordination issues, while other people’s ability to swallow may be impacted or lost. Some stroke survivors are left with damage to their brain which leads to issues with communication, a personality change, an inability to process information properly or a drastic alteration in their thinking skills. Stroke affects everybody differently and no two recoveries are the same.
I went from being an active, independent 33-year-old to someone who woke up in ICU, could not hold a spoon to feed herself and was not able to string a few words together to form a coherent sentence, and I am one of the lucky ones. I could not understand why people did not know what I was saying as I did not realise that what I was thinking in my head was not coming out of my mouth. The care and support I received in hospital was amazing. Many stroke survivors are discharged into the care of a rehabilitation centre or perhaps a nursing home to continue their recovery. Some of us are discharged home, which in theory sounds amazing. However, in the ten days I spent in St James’s Hospital, I came in contact with doctors, consultants, physiotherapists, speech and language therapists, a dietician, radiographers, an occupational therapist, stroke and epilepsy nurses and the list goes on. I went from being surrounded by medical professionals 24-7 in hospital to nothing. Not one medical expert came to our house following my discharge. At this time there were a huge number of everyday tasks that I could not do for myself. There were no follow-up services for me once I was discharged. There was no one to check on me.
The first time I needed to wash myself, I stood in front of the shower for a full five minutes trying to figure out how to turn it on. I only had to press one button but I had no idea what to do. I had to negotiate a social welfare system that is complicated at the best of times. It is worse when I could not even retain one sentence's worth of information. I had to relearn how to make simple food like toast or a cup of tea. I had to figure out how to tie my shoe laces. I had to work out how I was supposed to get my medication. These are simple everyday tasks but for people with brain injuries every little thing is difficult, confusing and exceptionally tiring.
Of course, my family and friends rowed in as best they could but where was the public health nurse? Where was any community home care team checking in on me? Why was no carer set up to see us through the first few weeks to help with the huge adjustment to be made when a stroke survivor returns home? Where was the counsellor to talk through this life-changing event with me? Where was the speech and language therapist to help me improve and adapt to my communication difficulties? Where was the physiotherapist to get me moving? Where was the phone call to remind me that I had a hospital appointment and to see if I could make it to hospital given that I was no longer able to drive.
I was put on a waiting list to be assessed by the National Rehabilitation Hospital and in the interim I had appointments with my neurological consultants. Only for a fantastic GP, I had nobody else looking out for me. It took from August 2019 until February 2020 to get an appointment with the National Rehabilitation Hospital. Typically, stroke survivors make the greatest improvement in the first few months following their stroke; it was five and a half months before I was even assessed. I am not blaming anyone. It is clear that our health service is understaffed, under-resourced and underfunded.
I am not alone in my story. In my Irish Heart Foundation young stroke survivors group there is a woman who has yet to receive any follow-up 14 months after her stroke. A gentleman who had four further strokes and has now lost movement in his right side was refused an electric wheelchair as he made three attempts to end his life. Ironically, the reason he attempted to end his life was because he had received no support and was confined to his bed. The consequence of this was the very reason he was refused an electric wheelchair. After unsuccessful lobbying of politicians and the health board for several years, he eventually raised enough funds to buy his own wheelchair. I am relieved to report it arrived a few weeks back and his new lease of life is indescribable. As another member put it: “Once you leave the hospital you are just left to figure it out by yourself. It’s impossible to access more services unless you have deep pockets”.
I was affected neurologically. I can have trouble communicating, remembering words, and remembering the meanings of words. I find it very difficult to organise myself. I have issues with my memory and find it hard to read and retain pieces of information anymore. It is incredibly hard for me to multitask. Silly things like when I am walking down the street and it starts to rain, I have to stop to zip up my coat as I cannot walk and zip it up. I still have trouble putting keys in locks.
I am a primary school teacher by profession. Although it has been two years, I am still not recovered enough to return to work full-time. I am in a catch-22 situation where I could possibly return one or two mornings a week and slowly build back up to full-time, but the Department of Education will not accommodate me. There are a huge number of stroke survivors whose work places cannot, or will not, adapt sufficiently to allow them to return to work. These are people who could be back in work, paying taxes and moving forward in their lives, who have the right to return to work, but are not being given sufficient support and opportunity to do so.
Fourteen months after my stroke I discovered the Life After Stroke Irish Heart Foundation Facebook page and everything changed for me. In my young stroke survivors support group there are people my age and younger who I can relate to. We can do exercise classes online daily and can join activities such as music, bingo or quizzes. Classes are run to promote brain activity through poetry, art and cooking. Talks are given by professionals on fatigue, the importance of diet and exercise, mindfulness, adapting to our new lives, etc. I have been able to speak to a counsellor. I have access to a stroke nurse. I can call my stroke co-ordinator at any time and families of stroke survivors also have support. The Irish Heart Foundation stroke check-in service provides practical supports and assists stroke survivors living as well as possible at home. Why can something similar not be run by the HSE? Why are these types of services not a given for all stroke survivors upon discharge from hospital?
Gabhaim buíochas leis an gcoiste don deis a chaint inniu.
Mr. Chris Macey:
I thank the committee for the invitation to appear to discuss stroke, Ireland’s third biggest killer disease and our biggest cause of acquired disability. In her statement, Ms Bardon outlined a sense of abandonment that is unfortunately replicated every day among thousands of stroke survivors countrywide. At a time of intense personal crisis, many people are confronted with a therapy wasteland after being discharged from hospital, often resulting in disability that is avoidably severe and prolonged.
Approximately 7,500 people have a stroke here each year and up to 70%, which is over 5,000 people, will be discharged with a disability. That number will soar in the years ahead with a predicted increase in stroke incidence up to 12,000 by 2030. During the last decade there has been a dramatic improvement in acute stroke care, despite residual under-investment and major staffing shortages. The death rate has fallen by over 25% and permanent severe disability has been substantially reduced. More people than ever are returning home after stroke but there has been no corresponding investment in community rehabilitation and life after stroke services that enable survivors to make the best possible recovery. This is clearly at odds with the commitment in the UNCRPD to full participation of people with disabilities in public, economic and social life, all the more so because the chronic deficits that exist cannot be blamed on prohibitive cost. There is no shortage of spending on stroke in the State. The problem is how these resources are spent. Economic and Social Research Institute, ESRI, research for the Irish Heart Foundation found State expenditure of up to €414 million on nursing home accommodation for stroke survivors, but just €7 million on community rehabilitation services that can enable people to remain living at home.
In effect, the health system starves recovery services of resources, waiting until after it can help people maximise their recovery and then spending vast amounts on institutional care that is often inappropriate, particularly for younger stroke survivors.
Much of what is needed to start eliminating deficits in hospital services can be delivered through the implementation of Ireland’s first national stroke strategy, which remains unpublished four years after being requested by the then Minister for Health, Deputy Harris. Among many important developments, it will tackle shocking hospital service gaps such as just 4% of patients currently receiving a psychological assessment after their brain attack and one in 20 getting early supported discharge services, which have been proven to reduce disability and overall health service costs simultaneously.
However, we also need a plan that focuses on the post-discharge deficits highlighted so eloquently by Ms Bardon. Perhaps the best illustration of the lack of priority in this area is that the health authorities have never attempted to quantify how many stroke survivors there are in the State. The figure of 30,000 that it has used comes from an estimate based on international studies that are a quarter of a century old. Studies by the Institute of Public Health and UK comparisons suggest the real figure is approximately 90,000 people. This raises two questions - how can the needs of stroke survivors be met when they remain unknown, and is there any intention to ever meet these needs?
Meanwhile, survivors are forced to navigate community services that, if they exist at all, have been developed in a fragmented and often age-specific way, discriminating against older survivors in some areas and younger ones in others. This makes accessing appropriate services even more difficult. Research carried out by the Irish Heart Foundation found particularly stark deficits facing younger survivors. For example, almost half of them either paid privately for physiotherapy or did not receive a service. However, the hidden impacts of stroke provided the biggest difficulties. Of the respondents, 95% suffered anxiety, 75% were depressed and 72% felt isolated, with no help available. Meanwhile, 71% did not get the counselling they needed and although 88% were in work before their stroke, just 36% were working when surveyed. The Irish Heart Foundations is addressing these deficits as best we can through a range of life-after-stroke services, including face-to-face support groups that are beginning to reopen post pandemic, a dedicated younger survivor network that Ms Bardon mentioned and a national phone support service assisting survivors to make the transition home. We also run specialised programmes, including counselling, fatigue management, emotional well-being and peer-to-peer phone support. Just a fraction of service costs are covered by statutory funding, however, which threatens their sustainability.
We remain a long way from meeting our obligations to stroke survivors as set out in the UN convention. Crucial first steps include publication and full implementation of the national stroke strategy, research to establish the number of stroke survivors in Ireland and a comprehensive assessment of their service and support needs, and development of a pathway covering the entirety of life after stroke. For people such as Fiona, the model of care lasts a few weeks and then it is effectively abandoned even though the person has to live with the effects of his or her stroke for decades afterwards in many cases. This pathway must include a right to a discharge plan and services available in the community as and when they are required.
Ms Mary Farrell:
I thank the committee for the opportunity to discuss acquired brain injuries. I listened to the remarks of Ms Bardon and I could raise many of the same issues she did. The same issues are arising for people with acquired brain injury on discharge from hospital. I am starting at the end, in a way, because of the way things are evolving. I recently found a letter that I wrote many years ago regarding the lack of brain injury services and it is as relevant today as it was back then. Not a lot has changed and that is very disappointing, given that Ireland has ratified the UNCRPD. There has been no improvement in services to align with the various articles of the convention.
There are approximately 800,00 people in Ireland with a neuro-disability or condition. These figures include people with people who have had a stroke. There are 120,000 people living with disability following an acquired brain injury and 98,000 people sustain a brain injury annually, ranging from mild brain injury through to very traumatic and serious brain injury. In addition, there are 40,000 people with epilepsy. Many of these conditions can coexist, that is, many people with acquired brain injury have a dual diagnosis and need several different types of clinical and rehabilitational services.
There is a lack of structure from acute hospital services through specialist rehabilitation and there are no step-down facilities, community services or supports in place. In 2011, the national strategy and policy for provision of neuro-rehabilitational services in Ireland implementation framework 2019-21 was published. Ten years on, there is very little to show for it. There has been no roll-out of community neuro-rehabilitation services and teams as envisaged and planned. There are a few pockets of services provided by Acquired Brain Injury Ireland and Headway Ireland, but these are limited to a few geographical areas and there is no implementation of the strategy as envisaged. It is fragmented and sparse. There is nothing resembling the national clinical programme for neurology model of care published by the national neurology programme working group and the clinical advisory group for the national clinical programme for neurology.
There are long waiting lists for neurological beds in Beaumont Hospital and, despite a complete rebuild of the National Rehabilitation Hospital, there was no net increase in capacity, particularly for people with brain injury. There is a long waiting list for rehabilitation and many people with acquired brain injury do not get a bed at all but are left at home for families to cope with, as Ms Bardon just outlined, or to cope by themselves, depending on their circumstances, as best they can. We are back to a situation like that which existed back in 1988. I will speak about my personal experiences later.
In addition, the HSE national clinical programme for epilepsy model of care document that was launched in January 2017, nearly five years ago, has not been implemented, not even in part. Indeed, the services for people with epilepsy have deteriorated. In fact, according to a report by the Neurological Alliance of Ireland in March 2021, there are 22,000 people on a waiting list to see a neurologist, an increase of 40% in the past five years. That is seriously under-resourced and many people are becoming seriously disabled or dying as a result. Ms Bardon touched on that issue. The recommended number of neurologists for epilepsy is 35 but the actual number is 22. That is epilepsy alone. The waiting times have lengthened, especially in the past two years.
There are no provisions for transport or community integration for people with acquired brain injury. There were three different types of transport schemes to help people with transport but I understand that at this time all three have been withdrawn, with nothing to replace them. Many seriously disabled people are unable to access public transport even if it is available. It can be an expensive trip to a Dublin hospital, especially given the cost of fuel and parking and so on. There is no support or provision for any of this and many people cannot get outside their homes unless they have a car and a person to drive it. I do not know whether anyone present watched the recent "Prime Time" television programme on wards of court, which had quite a lot of content on disability and brain injury. These people cannot afford to do these things on disability allowance or any other meagre allowance. The disability allowance does not equate with the cost of living. All present will be aware that the cost of living with a disability is an added financial burden as people must fund many services and items from their own pocket.
The cost of heating their homes has escalated to an extraordinary degree. Something will have to happen or people will end up sick, in hospital or in nursing homes.
Increases in funding for disability services have been announced in recent budgets and from time to time. That will take time to filter down, and we are still playing catch-up with figures pre-2008, when services fell through the floor. We know that from what is happening in the public sector, across the board, in hospitals and so on. That affected disability services to an extraordinary degree. I have been witness to that because I was there at the coalface each and every time all those changes happened. We do not seem to see the budgetary increases filtering down to actual changes to or improvements in services.
Our eldest son was involved in a road traffic accident in 1988 and suffered a catastrophic brain injury as a passenger in a car. He was on life support for many weeks in Beaumont Hospital and, later, underwent rehabilitation in the National Rehabilitation Hospital after a lengthy wait and a stressful time trying to get a bed there. It is the same now. That is very serious because that was 1988. There is no follow-up for patients who are discharged, and families or individuals living on their own are left to cope. It depends on their circumstances; that is where the outcomes change. Some families have a lot of support and others do not. It depends very much on the families concerned. We spent hours travelling to various hospitals where doctors threatened discharge, and eventually there was discharge. At that time, as would be the case now, there was no follow-up and no service at all. My son did well with the rehabilitation on offer at the time, but it was not specifically brain injury rehabilitation. He was eventually allowed home for weekends. He was prematurely discharged then and there was no planning, no support and no services. He was not fit to be discharged and needed further rehabilitation, but that was not available.
We were expected to care for our son in our own home without any help whatsoever. The impact of all that on the family was profound because our son had no insight into his difficulties, having a brain injury. I was working at the time, and when I tried to get help I was told it was my responsibility to stay at home and take care of him. We spent endless hours trying to find out more about brain injury and how we could help him. Back in 1988, that was difficult because we had no access to the Internet or information at the touch of a button, as we do now.
Eventually we found rehabilitation services in the UK. We got there after quite a long fight. In the meantime, the Office of Wards of Court was involved. I will not go into that here, but it is a limiting factor as regards what a person with a disability can do. We had to fight a battle with the services here to get a referral to the UK, and we had to fight a battle to get our son his own funding to take him to the UK. There was absolutely no physical or financial help for us to do any of that. It was an absolutely terrible time.
Then, when our son eventually benefited from the services in the UK, the recommendation, after nearly two and a half years, was that he return to live semi-independently here with support for a trial period, with a view that that would continue. Of course, there were no more services here at that point than there had been earlier, so he still had no services and we were left scrambling around for physiotherapy and other support to help him. He had been involved with a number of projects that had some support when he lived in Dublin but they did not work out very well because there was a lack of coherence and a lack of structure. It was very ad hocand falling apart because there was no one co-ordinating it all.
He developed epilepsy and, with the acquired brain injury, that became a really difficult time. It exacerbated the difficulties he was experiencing as a person with a brain injury. Over the years, when he returned back home to live semi-independently in his own home, we tried to get services for him. There was a constant battle over the 1990s and 2000s, and we still had to go back and forth to the UK many times for services which we could not get here or which were of such poor quality here that we ended up going to the UK for them anyway.
Chris's father and I, in our 70s now, have been providing support and care for all those years. When we reached 70 we thought something had to change and we had a lot of meetings and confrontations with the HSE - and I do say "confrontations" because the meetings were contentious. The HSE officials were saying, "No, you cannot have", and we were saying, "He needs". We were constantly explaining what our son needed and they were telling us what they were giving us. I was saying, "I do not need anything. My son has these needs. This is the assessment and these are his needs." Eventually, we got enough services to allow him to continue living in his own home. That is working quite well for him and for us, and for that, to anyone who might hear this, we are extremely grateful to those involved who managed to make that happen, despite all the odds being stacked against us.
There is no comprehensive shared protocol involving all the different disciplines now involved. That means gaps and confusion. You have a physio or an occupational therapist with the HSE, an acquired brain injury service doing another thing, another service provider doing home support, the clinical end and the GP. You see all these moving parts and you have no one person with all the information in any one place. It becomes extremely frustrating and difficult and, for us, to step back from this and allow it to progress as it should is impossible because it keeps coming back to me as it seems like I am the reservoir of all information for everything and everybody. There is insufficient physiotherapy, occupational therapy and psychology services, and appropriate brain injury services are not available in every area. Even what is available is not often suitable to a person who may be, like our son, 30 years post injury. The services are very much geared towards people who are newly injured. There is a very different type of service need in that regard, and there is a lack of recognition and probably a lack of service funding - I do not know - to separate out those services and provide different types of services for different categories of people with acquired brain injury. There is no day service and no centre to hold the service all together.
Our son's life lacks meaning and purpose. It seems like all our work still was not enough to get our son and others like him the services that are recommended and needed. There are no stand-alone specific brain injury services, despite all the reports and recommendations that have been made and accepted. They are included in the overall disability services. There are insufficient physiotherapists, occupational therapists, neuropsychologists and other clinical staff. There is no one to replace them when they go on leave, which may be for an extended period, during which the person is left high and dry, without any service, or a reduction in an already meagre service. At one stage a whole year went by when our son did not have any physiotherapy input. That would have a hugely detrimental impact on him and he would be regressing. It is a constant battle to keep the services and to keep going. The situation since the advent of Covid has been very difficult, with a lot of services and face-to-face meetings with clinicians. Case reviews have been held via online forums and there are continuous gaps. You have to look for everything. Protocols that were in place in respect of spasticity, for example, appear no longer to apply. The rules change without explanation.
I wish to raise an issue as an aside, if I may. There is a big problem with online forums. Everybody now assumes that everybody is online and can do Zoom meetings or whatever else. The software the committee uses is not Zoom, but members know what I am saying. It is an online forum. I cannot state this strongly enough. I do not have this problem, thank goodness, but many people my age and people with brain injury are not able to access these forums, and not alone that, but in a lot of areas - we see this in the newspapers every day - there is no broadband. You need up-to-date equipment to be able to access these forums. You cannot access them on a ten-year-old computer. It probably will not be able to do it. It is therefore not feasible for everybody to do this. I just wanted to place that before the committee as an aside, but it is across the board, I think, very important for everybody.
That is my piece. I thank the committee and the Chairman for their attention.
I thank the witnesses before us.
I am very grateful to Ms Bardon and Ms Farrell for so generously sharing with us their experience so that we can learn from it and figure out the best way to serve their needs by advocating and by calling for debate. I have a general habit on Thursdays of going to the Seanad after these meetings and calling it out. To be fair, the Leader, Senator Regina Doherty, has facilitated us thus far in giving an opportunity to discuss the cost of disability. A debate is scheduled on that in the coming weeks. There are things we are hoping to action. My colleagues here who are also in the Seanad are very good at coming in and articulating this.
As Ms Farrell spoke last, I will begin with her. Where to begin? It is appalling that while she is such a fantastic advocate for her son, and clearly determined and able to advocate and fight tooth and nail for him, there are families who do not have a Mary Farrell. I find that quite frightening. We should not have a situation where it depends on the capacity and ability of family members to determine the quality of life of an individual where there have been life-changing incidents such as these.
Clearly, a medical model is operating whereby, in the immediate aftermath of whatever has occurred, there is some sort of a minimum threshold that says "You are fine now, off you go", and people are left in their own. I gleaned this also from Ms Bardon's experience, and the experiences of others that the witnesses have recounted. That is not okay. This is all foreseeable and it is very annoying. If a multidisciplinary team was pulled together, somebody could probably sit down and draw a spider diagram of everything that are going to be needed, put together a package and figure out a co-ordination system. I do not have a medical background but I imagine that anyone with any sort of administrative ability would be able to foresee and pull together the competencies, and be able to have a bespoke plan such as that produced by the Irish Heart Foundation. I fail to understand how this has not happened and how it is all so disjointed.
I am very grateful that we hear from people such as the witnesses who are willing to come forward and so generously share their own stories. It is a vulnerable and difficult thing to do, but it is also enraging and empowering for people like me to be able to refer to people such as Ms Barton and Ms Farrell. I can say that they have come into the committee and this is what they have said, and ask what we are going to do about it with a sense of anger and outrage on their behalf.
I will come to the specifics. I agree about the issues relating to digital poverty and accessibility. We seem to be moving to a presumption that everybody has access and ability. We heard from a witness some weeks ago regarding an injury who talked about the inability of people to use the digital platform. We need to examine that as well as everything else.
Earlier this week, I watched the wardship documentary on "Prime Time". It was outrageous. My question is on that and the Assisted Decision Making (Capacity) Act 2015. Does that Act make any difference for Ms Farrell and her son and if not, why not? We could have a to-do list coming out of that. If so, how can we enhance that?
Ms Bardon related her story. I will come back to her employment in a moment. I would first like to come back to the gentleman in her group who was refused an electric wheelchair. That suggests that the criteria for qualification are askew. It should be about what he needs, but somebody is adding in other qualifying criteria that assess something else beyond where it should be. What are Ms Bardon's views on that? When a person demonstrates the need, that is it and it should be automatic. No other aspects should be factored in.
I am not ignoring everything that was said but I am anxious about Ms Bardon getting back to work. By profession I am an employment and privacy lawyer. I would look at this through that lens and I would ask why Ms Bardon is not being given reasonable accommodation and why all of that is not happening. Is it to do with Covid-19, or is Covid being used as an excuse? I am interested in that. I am confident that her situation is not unique. If there is a systemic issue that is not facilitating reasonable accommodation, then we need to call it out and name it.
The Irish Heart Foundation is extraordinary and fantastic. I will say what the witnesses do not, which is that only 3% of its funding comes from the State, while 90% of it comes from fundraising. The foundation is amazing. I have family members who have benefited from its support. Its work is extraordinary. If we could take the Irish Heart Foundation model and turn it into how the HSE should do the business, we would be doing very well if we could only get a little bit of it. I congratulate the witnesses and I thank them most sincerely.
What reasons have been given for the stroke strategy not being published? Why commission something and then not act on it? It seems extraordinary. Were there flaws in the process of putting it together?
I apologise for taking so much time, I could do with having all the witnesses on my own for a while to understand this. I thank the witnesses.
Ms Fiona Bardon:
The gentleman I spoke of was just one of the main examples I used because I was scrolling back through our WhatsApp group when I was writing my speech. He was the one that stood out most. What seems to happen is, as Ms Farrell has said, a person might get something initially and then when the person applies for it a year or two later and it is denied on different grounds. My understanding of his situation is that because he attempted to end his life, they felt that if he got a wheelchair it would give him more of an opportunity to try it again. This man was bed bound and could not leave his house. He could not go to see his grandchildren. This is why he became so depressed and that is why he wanted to end his life. It does not make any sense to me. Over and over again so many people in our WhatsApp group are saying the exact same thing: "We do not get the funding or we must pay for things ourselves." This is fine if a person has the money. If, however, a person does not have the money then he or she cannot do it. For example, when I presented with the stroke I had had a seizure and broke my left shoulder. Because my stroke was on the left-hand side of my brain it was my right side that was affected. One could say that luckily it balanced itself out somewhat. I was discharged from hospital and I was not able to go to the gym to do classes and so on, things I would normally have been able to do. I got myself a personal trainer recommended by my normal physiotherapist. I had to pay for this myself as there has been no funding for that. Money that I have been saving for years for a deposit for a mortgage is now being put into my physical needs. On top of that there is counselling. I previously attended a counsellor for other issues. As soon as this happened I realised that I would definitely need to go for counselling again. This has also come from the money I had saved towards my future. It is €60 per session. I do not have that kind of money to squander away but my mental health is especially important.
If I do not use this money towards me getting better now, it might mean that I do not have a future. This is a massive thing because I was lucky in that I had been bullied, you could say, by my aunt into getting salary protection when I became a teacher. This salary protection means that I, thankfully, still have 70% of my wage coming in. If I did not have salary protection, I would be getting long-term illness or disability, or whatever it is called at the moment. I have effectively been pensioned off which means I am getting €50 a fortnight because it is based on the amount of service. Therefore, in total I would be getting less than €1,000 a month. I live in Dublin, I rent in Dublin, I have expenses, I have bills, I have to buy food and so on. Aside from that, I have my personal training and my counselling. That costs another €400 per month, which is a lot. At the moment I am getting 70% of my wage, but money is still very tight. Things are expensive. I have car and medical insurance to pay. There are so many other things to pay for, and it is coming up to Christmas. Due to Covid, you cannot go on holidays but these are things I would have taken for granted before. I cannot get my hair and my nails done. I cannot do any of those things anymore because I do not have the money. These are things that are unforeseen.
I am fine now because I have worked so hard physically, but what happens if I have a transient ischemic attack, TIA, in a few years' time? What happens if I go back to work and I realise I am not able for it and I need more speech and language therapy? I am then put on a list and I might not be seen for two years. Why is it not the case that if I realise I cannot do something that I am not assessed within six weeks? When I got out of hospital, I was put on a community speech and language list, although I am not really sure what the programme was. It has been two years and four months since my stroke and I have not heard from them yet. That service does not exist to me. Perhaps the lady went on maternity leave and took extended maternity leave. I have not yet received that phone call and I do not know why I have not.
When I was with my consultant, he told me that I was well able to talk and hold a conversation for ten minutes so he was going to take me off the list for the National Rehabilitation Hospital. Just because I can have a ten minute conversation does not mean I can do anything. It is little things. I can have normal conversations, but I cannot read. I have not been able to read a book or a novel since. I read since I was a child and would have read three books a month. Since then I have read the guts of two books. One of them was from the What a Complete Aisling book series. It was not a book that I had to concentrate on and read every single detail. This is the kind of place where the speech and language therapist might come in.
I cannot speak on behalf of people with physical disabilities because I was really lucky in that I recovered physically. I did not have very much weakness on my right-hand side and because I had broken my left shoulder, it kind of balanced itself out. I am not the best person to talk about physically difficulties because I do not have that general experience. However, I chatted to other people and one of them was said that it was the tiny things that you cannot do. For example, I woke up this morning when my alarm was going off and I rolled over and turned it off. If you cannot turn over in the bed, you cannot turn the alarm clock off yourself. You cannot get out of bed by yourself. You cannot walk to the toilet and you cannot sit on the toilet. You cannot wash your hands by yourself. The gentleman described to me standing and trying to wash his face. His dominant side was affected, so he is now using, let us say, his left hand. He said he was washing everywhere but his face and that by the time his hand got to his face, there was no more water. That is just the first few minutes of the day, and that kind of thing happens all day long.
There are the little things. As I mentioned earlier, what you are trying to say in your head cannot actually come out of your mouth. You do not realise that what you thought you said does not match up exactly with what is coming out of your mouth. You are watching people, you are looking at their reaction and you are trying to watch their body language. You realise that something has gone wrong but you are not quite sure why it has gone wrong. It is with those learning processes over time that you see you have not done something right. You are then trying to hide your deficits. However, in doing so, you are nearly fooling yourself into the fact that you are getting better when you are not. You are just better able to hide what is wrong with you.
I was asked about work. Since I am a teacher, I was told I had to start back on two or three full days a week and then build up to five full days within the space of a term. My neurological team has said I am not allowed to do that and that I have to start with one morning a week, then two mornings a week, then three mornings a week, and build back up that way. However, the work policy around that states that I have to start back at two full days and work up to five full days.
I have gotten on to my union and to the Department of Education directly. There seems to be no give on that. When I asked the reason for that, I was told it was that substitute teachers are paid on a daily basis and not on a half-day basis. It will not let me do one day a week while the substitute does four day. It said that is not possible.
Another frustration for me is that if I return to work two days a week, I will only get two sevenths of my wage because it states there are seven days in a week. We do not work seven days a week; we work five days a week. It does not make any sense why I would only get two sevenths of my wages if I am working two days of the week.
If I decide my working days are Tuesday and Thursday, to give myself Friday, Saturday, Sunday and Monday to recover before working again, the weekend is still counted as sick leave. I have exhausted all of my sick leave because if you are out on a Friday and a Monday, the Saturday and Sunday are counted as sick leave as well. If you get sick the last day of the school term before the summer and you are sick the first day of the school term in September, all of the summer is counted as sick leave.
I had applied for a career break to go to Dubai. That was the week I got sick, so I did not get on the airplane, thankfully. I was told I would not have survived if I had gotten on the airplane. I applied for sick leave straight away. I was told I was on a career break so tough luck. I did not get my sick leave until a year after. Again, thankfully, salary protection stepped in there for me, so I was okay in that regard.
Obviously, there are other people in my situation as well. When I asked the National Rehabilitation Hospital how we were supposed to get around this, it said there are so many teachers who come through the door that it is impossible. It said it was going to have to see if it could build up my rehab days somewhere else. There was one other thing I was trying to think of but it is gone out of my head.
Mr. Chris Macey:
I thank the Chairman. I just wanted to come back in on the national stroke strategy. We had a meeting with the previous Minister for Health, Deputy Harris, who asked for the stroke strategy in October 2017. It has not been published because this area is utterly under-prioritised.
Stroke is always at the bottom of the pile when it comes to funding, whether it is in hospitals or within the community. Some €50 million for new clinical strategies was announced in the budget, and stroke was not even mentioned. That is something that we are used to.
The strategy itself is not a full strategy. It was deliberately curtailed to increase its chances of getting funded. It concentrates on acute service areas. It will save lives and reduce disability and it will help people who have not had their stroke yet. However, it will not do that much for people like Ms Bardon, who are living with the effects of stroke in the community. That needs its own strategy.
Since we are at such a basic level, what we need to do first is count the number of people who have had a stroke or are living with the effects of stroke, before we can work out what they need. We need to do a full assessment of the needs in the community and then try to address them. We are sadly still at square one.
Mr. Chris Macey:
It was the HSE's national stroke programme. No blame can be attached to the stroke programme as they do fine work. They are utterly under-resourced. There is a clinical lead who is only able to spend a portion of his time acting as the clinical lead because he still has to do his day job.
There is a project manager, although for much of the time over the last couple of years there has not been a project manager because people have moved on. That has been a huge problem.
The resources should have been given to enable that strategy, which could have been published within a few months. However, it was not published because it was not resourced by the HSE because it does not prioritise stroke in any meaningful way, as far as we can see.
Ms Mary Farrell:
Senator Seery Kearney referred to the decision support service, DSS. We are talking about part 6 of the UN convention, the changes and the Assisted Decision-Making (Capacity) Act. All of that is under review. The amendments to the legislation have not been completed yet. There are a lot of concerns, and different groups and different categories of people will have different issues. We hope this is good news for everybody going forward from June. The commencement of the DSS will be in June of next year. That is good news for the people coming in, as they will no longer have to go through the Office of Wards of Court system.
Those who are currently in the system will transfer or discharge, and they will have to go through a court hearing in which they will be discharged into the new system. It is not clear yet how many might eventually go through. Some might be discharged. There are different levels of support, so it will depend on what category of support they go into. That will have to be decided in individual cases.
There is a huge focus now on the DSS when we raise any issues as wards of court. We are in the wardship system. Anyone who saw the "RTE Investigates" programme knows what I am talking about. I hope anyone who has not seen it will get the opportunity to look at it. It clearly shows many of the difficulties, which are only a sample or fraction of difficulties that exist in the wardship system.
We have been at this for more than 30 years, so you can imagine I have gone many a round with many people. Faces change, but the problems remain the same. We have gone a different route than many people. For those who do not know, there are many restrictions on wards of court. They cannot leave the country without permission so they cannot go on holidays abroad without permission. They cannot make financial decisions, decisions about medical procedures, decisions about healthcare and decisions about all sorts of other issues.
Financial decisions is one part of it. A person may be made a ward of court, often as a result of an acquired a brain injury in an accident. The person is awarded compensation but that award will not be paid out until he or she is made a ward of court because that is part of it. Senator Seery Kearney will understand that because of her background. This is the process and even if you object to it, eventually the time will come when that is what will happen.
We know of a couple of cases where people objected and were in the courts for a couple years. They were deprived of the funding they needed to help the disabled person. At the same time, they were trying to get out of the system and get the funding set up differently, such as a trust fund or something like that. However, that is not possible.
Many people who are in wardship do not really meet the criteria for wardship. One man on the "RTE Investigates" programme stated clearly that he had a brain injury but that it did not mean he was incapable of making decisions. Many people like our son, that man and others in wardship would not meet the criteria for wardship if it was a test. I have not tested it because the bottom line is that someone like our son needs protection and he needs his funds protected. He needs a system there to support and protect him. I cannot say that the wards of court system has supported or protected our son. Members heard me discuss going to the UK for rehabilitation. They would not believe the difficulties and the obstacles put in front of us in allowing us to do that. From that day forward, we decided that this was not something we were going to let rule our lives. We were going to fight it, when necessary to do something, but just jog along and do our own thing. That is why our son lives in his own home and not with us. We live quite nearby and we are able to support him. Yet at the same time, he has that level of independence. His dependence has grown with his disabilities, and that is partly due to the fact the services have not been. You need maintenance for someone with an acquired brain injury. People will say he has had rehabilitation but they do not understand that this is a lifetime effort. You have to have maintenance, you have got to do physiotherapy and your exercises, you have to have your splinting and you have to have all the other additional services that go with that.
I refer back to the DSS because of the difficulties we have now. When we have a parliamentary question asked, it is directed to the DSS. We are told this is the solution and not to bother it because that is old hat. This is the message we are getting, that is, that this is all old hat. The DSS tells us this is the panacea and this is the solution to our problems and that it does not know what more we want.
There are many problems in wardship, and some of them will be addressed on leaving the wardship system. There are outstanding issues that will have to be addressed, perhaps at a forum. We have already discovered through various Oireachtas committees, reports and a Dáil debate, that the Comptroller and Auditor General does not have authority to oversee these funds. There is no oversight of this. Despite these people being under the protection of the State, there is no oversight. The State has no oversight. We are told that this is a matter for the courts and that it is obliging us by giving us information but it has nothing to do with it. The committees and everybody else have said it has nothing to do with them and to move on.
There are people who are financially compromised. Elderly people, like ourselves, are providing the backup to allow these wards to continue living in their own homes and their properties. What will happen when we are no longer able to do that? These funds are missing, although "missing" is not the correct word. Wards can no longer enjoy the funds that they should have. This has to be addressed and the Oireachtas will have to find a method, a mechanism, a forum or a way of doing this. We are adamant about this. It is not going away.
Both Ministers said that this going to be fine and wonderful. It will be wonderful in many cases and it will help enormously. A three-year period is provided for in the legislation for the transition of wards from the wards of court system to the DSS. During that time, many people are going to be in wardship. DSS will commence in June of next year, and then there will be an additional three years. Some people could be in wardship for two to three years. As Ms Sarah Lennon from Sage Advocacy said, many people will die before they ever get out of the system. There is a lot here but we will not cover it here. It needs a separate forum for debate. People's voices need to be heard on this. That is all I can say about it. It is severely impacting on a personal level.
I thank Ms Farrell. I have sought a debate in the Seanad on this topic, so I expect we will be exploring it there as well, and ventilating the very real concerns that were so well exposed in the documentary the other night and that Ms Farrell confirmed.
I thank the Chair and I thank the witnesses for appearing before us today and sharing their lived experiences. Acquired disabilities are often overlooked and not discussed enough. We know now that disabilities as a result of accident or illness make up a considerable percentage of people with disabilities, and it is a number that increases with age. I have questions for each of the witnesses, if there is time.
If not, a written response would be great. The first question is for Ms Farrell. She highlighted the incredible barriers she faced and the continuing need to fight for services that most people would consider entirely reasonable and necessary. One striking feature in her ordeal is the ongoing lack of co-ordination and poor communication within the HSE, which results in little or no therapies and many waiting lists. Other witnesses have spoken about similar experiences. Is it time for people such as Mr. Macey to be assigned a single advocate or case worker who can help co-ordinate everything and do the heavy lifting in arranging care, appointments and the like? Second, can she elaborate on the impact of the lack of access to home care support or to personal assistant services and how increased access could improve the life of her son so he can enjoy life like everyone else? Third, she described how there are no appropriate day or resource services for people with neurological disabilities. Could she expand on this and on how access to appropriate day services could improve her son's life?
Ms Bardon described the massive difference between the care she received in hospital, with access to multidisciplinary teams and constant interventions, and absolutely nothing at home. That cliff face of a lack of care is unbelievable. I do not know how it is allowed to happen. Again, it is a situation where there is an absence of joined-up thinking and a person-centred approach in the HSE. It is truly shocking. Can she elaborate on the difference that early interventions and supports at home would have made to her and her recovery? Second, the unwillingness of the Department of Education to permit her to work part time and build up slowly to full-time is also disgraceful. The Department has written to the committee outlining its commitment to the UNCRPD but we see the reality here. Can Ms Bardon elaborate on how it could support her in returning to work? She also highlighted the importance of online support groups as conduits of information and assistance. That is also a common theme among people with disabilities and their families who appear before the committee. They only learn about services and schemes and ways of accessing them through others. She rightly called on the HSE to run these types of services. Will she elaborate on that?
Finally, I have a brief question for Mr. Macey. He mentioned that there is a predicted increase in strokes. Will he elaborate on why this is the case?
Ms Mary Farrell:
That is very interesting. I will start with the management and one person taking responsibility for the co-ordination and management of the person's services or case. Interestingly, where our son lives, which is not where I live even though it is quite near, there is an ABI case manager, which is quite extraordinary. There is also a care manager. The ABI case manager is the stand-alone service and because it is around the ABI services that meet our son's needs it is difficult to see the role that the manager plays, but there is some connection there because there is some training with carers in acquired brain injury. There are online training sessions every month for a period of perhaps six weeks or something like that. That happens. It is like a little stand-alone piece.
The ABI case manager is involved in, and comes to, the case review, but the manager does not have an overall remit. Then there is a care manager. I will bring in the home support here because, as I said, we struggled doing this ourselves and we struggled with a little bit of support. Gradually, when we were no longer able to provide the level of support needed, our son was provided with a package of care after a long, tedious process. There is a care manager, a state registered nurse, SRN, who is responsible for the medical end and overseeing that area. There is that piece, yet there is no bringing this together in one place. The only time we get to discuss it in one place is if we have a review. As I said, we have had the online reviews, which are a little unsatisfactory. It is difficult for everyone and to get people to the table. I would prefer if a physiotherapist was out doing physiotherapy with a patient instead of spending time doing an hour-long meeting with our son. I understand that, but the physiotherapist might send in a report and so forth. However, it is difficult to get everyone together.
There is no single person. There are data protection issues and there is patient-client confidentiality, for example, liaising with Beaumont Hospital and then with the GP. There are all these pieces and they are all moving around, but there is no one person who can do that. It is not possible for a person, given the restrictions in all those areas, to get terribly involved and find out all the information the person needs to know. I often find myself back in the fray again because we have the legal responsibility in decision-making. Does the Deputy understand that? If it comes down to changing medications or epilepsy medications, for example, we would know because of our background. People working with our son now would not know all of what we know and the difficulties he has had with particular medications or issues in the past. The information we have sits there and one could not possibly put it on paper. Nobody would have the time to even read it. There is no way of managing that, whereby one person can do all of that given all those restrictions. That covers the home support and the area of the case manager, the case manager's role and how difficult it is.
The other question was about day services. There has never been, and I do not know when it will ever happen, a day service that is geared to people with acquired brain injury and the area of acquired disability. It is badly needed because it would provide structure and a centre of focus where people, perhaps the case managers, could meet and talk to other people. There could be an opportunity to do more and our son's life would be greatly improved. In a centre like that there could be physiotherapy and occupational therapy. There was an attempt to do that before 2008. There was a centre that had physical and sensory disability services. It was a wide range and not specifically for ABI, but it had physiotherapy and OT during the week. However, that was then brought back into clinical services in the HSE and the services went pear-shaped after 2008. That never recovered. It was never restored to what it had been previously. A day service could incorporate many of these, but it is just not there. I referred to the reports and the national rehabilitation strategy. Where on earth is it?
Ms Fiona Bardon:
The Deputy's first question was about the care I received in hospital versus nothing and highlighting the lack of care when one is discharged from hospital. First, we did not quite realise what was wrong with me. When you are in hospital people use medical terms and you are not fully with it either, which is another issue. When you are discharged you think, "Oh, I must be better; this is fine". You are discharged home into an environment you are familiar with but might not really remember how to use. Basically, you have to relearn an awful lot of things. When you are discharged you think that the reason for being discharged is that you are better. It is probably a lot to do with the lack of funding, beds and the like but it is also, I imagine, that the hospital has got the person's medication under control and there is not that much more it is possible to do in hospital versus somebody who is coming in from a road traffic accident or is to have an operation and needs the bed more.
Nobody in the nursing community or whatever it is knew that I had been discharged. I do not understand why there is no social worker or overall community team that would get a notification from the hospital saying, "Fiona is 33 years old and has been discharged with a stroke. Can you call to the house in three days' time and see how she is getting on and what needs to be done?".
I was discharged into my mum's care. My mother has no medical background and she has her own medical issues. She did not realise what needed to be done and she was still getting over the trauma of having found me having a seizure on the floor. She was dealing with all of that and then sitting beside me for the next ten days in hospital and the worry of having to get over that. On discharge, the only real guidance that she was given was how to use the pen so that if I was to have another seizure it would stop me having a seizure. That was it. There was no recognition that perhaps she might not be able to do this, along with all those other little things. People working in the medical field are used to dealing with these issues every day and can forget that once a person leaves the hospital he or she are lost. Yes, medical staff will say to give them a call any time, but then you ask yourself if it is a stupid question or perhaps they are so busy I might be bothering them. A person does not want to take up the time of nursing staff.
I believe that everyone should get assessed when they leave hospital. They do a physical assessment and a speech and language assessment. For example, they made me walk up a set of stairs, and checked that I could swallow and so on. It was three months later, however, when I was beginning to get better that I realised that while I thought I was 100% I was completely doolally in that I was not making any sense, but in my head I was making sense. It shows how it can be six months later, as a person gets better, the deficits come out a little bit more. The person has dealt with the stuff that has come up straightaway such as not remembering how to have a cup of tea, and then he or she must relearn how to boil the kettle and remember where the cups are. As we go from relearning to things becoming automatic again, other things can start to show up as issues. For instance, my inability to read would not have shown up for a long time because I was so tired having to do all of the normal things such as getting dressed and getting showered, brushing my teeth, and going for a five-minute walk. This all took so long out of my day that I was exhausted, so I did not know that I could not read. Those kinds of things might not show up initially. Ms Farrell also mentioned it earlier. For her situation with her son, things crop up over the years. People need to have check ins every now and again. I am aware that in an ideal world it would be great for everyone to get checked up every six month. It is highly unlikely but something has to be put in place. The things that are cropping up for me now are completely different from what I needed initially. I am still with the National Rehabilitation Hospital, which is good. As Ms Farrell said, I might go in and do a course for six weeks and then be let off again for a few months until they might call me back in again. I did a course on what happens when a person has a brain injury, how the person is learning how to redo stuff and about the neurons are finding different pathways. Another course was helping me with my organisational skills. Back in April I also did a course on reading and how, when I am reading, to make a spider diagram of the main characters to include information such as this person works as a teacher, and the mum is called whatever and the sister is called whatever, so that if I want to know what the person is called I could look at the diagram to get a quick reminder and then continue with the story. It is about trying to put those things into practice.
If I am ready to go back to work, they must figure out my deficits to get me back to work and what needs to be put in place for that. Those places cannot really do everything for everybody. Ms Farrell also mentioned other charities such as Acquired Brain Injury Ireland, Headway, but each organisation may have its own niche and a person may have to go to different places. As was said earlier, we do not know about this until we find Facebook pages or get onto these groups. I did not realise that the Irish Heart Foundation dealt with heart and stroke. Why would I? There had been no strokes in our family and it had never been an event before. None of us would have known. We would have known more about the Irish Cancer Society than the Irish Heart Foundation. I typed the word "stroke" into Facebook and this came up. I thought it was amazing. I logged on and typed in words, and found all of these people who, while they do not have the exact same injury, had the exact same experiences where they had been pushed aside and they had not known what to do. It was little things. I had been able to get my driver's licence back a year after. Because I had a seizure it had been taken from me. People must go through the Irish Wheelchair Association to get assessed and then through the doctor or the consultant. Then, a few weeks later someone will come up online and ask "How do I go about getting my driver's licence back?" I was able to tell them. This kind of information is not given to people. I do not understand it. If I am being discharged from a ward and surrounded by stroke patients, why can someone not say: "The Irish Heart Foundation does this; Headway does this; Acquired Brain Injury Ireland does this; this person will be a social worker; we are going to get a carer for you for two mornings a week for the next six weeks; and the carer will see if you need physio, or whatever it is." It does not make sense to me why people are not given leaflets or information. It is overwhelming. It should be the case that we are told that someone would call in a week's time when the person has settled and perhaps figured out what he or she needs, and be able to go things then. Another lady pointed out to me that if you can speak they think you are fine. Being able to speak and being able to live and fend for yourself are all very different things.
The Senator also asked about my returning to work. My school is a very big school with 600 or 700 pupils. To me that would be overwhelming, with so much noise and coming and going all of the time. Ideally I would love to go to a smaller school but my permanency is with my school, so I have to go back to my school. That will be a big thing for me. When we were in college and in our first teaching practice we are brought out. I have had many teaching practice students in my classroom and for their first time out they would come out to me. I would teach in front of them for one week and then they would come up and teach three lessons per day. That would be brilliant for me because I would be able to go in and be reminded of how to teach. I would then be able to take over a lesson or two per day. It would not have to be the case that I am in straight away and in charge and responsible. It is 35 students and there is no point pretending that we do not have 35 students in our classes because we do. The responsibility of that would be a bit too much for me at the beginning. If there was a lead teacher and I just had to deliver the class and do the assessments and teach, and if there was also a backup there for me, it would be good.
Learning support and resource teaching, and teaching English as an additional language, are all special education teachers that have grouped together recently. If one is a special education teacher one can co-teach or take smaller groups out to do more individualised learning. That would be more ideal. With year groups that I have taught already, because I have had to relearn so much, I have my plans done and my resources made for year groups that I have taught. It would be a lot easier for me to teach in a year group I have had the experience of teaching.
Some schools are entitled to half a teacher because of children with special educational needs, where perhaps more students are entitled to half a teacher, or a teacher for two and half days per week. This kind of situation would be ideal for me where I would not have to go in for a full day, or perhaps I might go in for five mornings or one full day and one half day. There just does not seem to be any wriggle room. It makes no sense to me because there is a massive shortage of teachers at the moment. There is also a massive subbing crisis. Teachers from Ireland are teaching in Dubai and are getting way better pay, and there are teachers who are retired coming back into sub. It is just a mess at the moment but that is a different issue.
In saying that, for me to get back to teaching one or two days a week it would have a massive impact on my illness benefit, and it would also have an impact on my salary protection. They say that if I am able to work then they do not need to pay me anymore. They do not see the bigger picture that I am only able to work one or two days a week. I still need to live and I still have bills to pay. It would be silly of me to agree to work for one or two days a week knowing that all of that would be taken away from me.
The last question was about the type of services we need and I believe I touched on those already.
Mr. Chris Macey:
Just to pick up on one point Ms Bardon made about the cliff face in terms of going back into the community after hospital discharge. As members well know, the HSE has a plan for everything, but stroke survivors are not entitled to a discharge plan on leaving hospital. In the UK, that is part of the entitlement for stroke survivors. There is a six-month follow-up and then an annual appointment after that. We need something like that. We also need clear information on the services that are available and what is not available to stroke survivors. I know one man who spent 12 months looking for services. He was relieved at the end of that time when he found out that there was nothing available because he said he felt stupid that he was not able to find what was out there.
I was asked the reason the number of strokes will increase so rapidly. That is really down to age demographics. The median age for stroke in Ireland is 74, and we are going to have a lot more 74 year olds. Also, one in four of all strokes is among people of working age. We are concerned that this group is growing as well for unexplained reasons. It is not fully clear, but that is a huge area of unmet needs in terms of stroke services in the community.
The witnesses are very welcome to the meeting this morning. It has been very educational. I met with Headway and the Neurological Association of Ireland previously and they highlighted many of the issues, but it is good to hear the personalised real-life stories and the practical difficulties for people. To be honest, it is overwhelming to be confronted with those stories. I cannot imagine what it is like to be in that position. I thank the witnesses for coming here and for their honesty and advocacy this morning. We learn so much at these committees. It is of benefit to have the notes and submissions from the witnesses. We now have a very powerful tool to advocate on behalf of the witnesses and to use their words. I thank them for that because it is very important.
I do not have too many questions as many of them have been answered already. The witnesses highlighted the blockages, barriers and lack of uniformity. Mr. Macey referred to a man who was glad there were no services because it made him feel better that it was not his fault he had been unable to find a service. It is a sad indictment of the system that the man felt it was his failure that he could not find any services. That is sad and upsetting. There is no one there to look after the individual. The service is fragmented. There is Headway and the National Rehabilitation Centre and the Irish Heart Foundation. I met with Kathryn in the Irish Heart Foundation a few times. These organisations are wonderful, but we are missing a critical database of stroke victims and the link in terms of making the stroke strategy a reality. The strategy is probably more than likely out of date at this stage. Even if it is published, there will be gaps because there will be changes in the meantime.
If she does not mind me personalising it, how does that make the Ms Bardon feel? She referred to the blockages in her school. She would be such a valuable resource to any school or place of employment, given her experience as a teacher and with this issue. She is the type of person that I would love my children to be taught by because she has an understanding and empathy towards difference and of individuals in a family. We are missing out as parents and as a State on having people like her teach our children. How does that make her feel? How does it impact on her recovery? Ms Bardon is fighting to recover. Ms Farrell's son is also fighting to recover and to continue his recovery. As Ms Bardon says, it is not just a case of saying a person is discharged and they are fine as they are at home. We are talking about a lifetime. How does that make her feel to be constantly othered and boxed off? I am sorry because I am a little emotional listening to the witnesses. I feel that we have let them down so much. How do the gaps in the service impact on recovery? I presume there is an incredible lack of mental health support to empower Ms Bardon to recover to her best self. I thank the witnesses.
Ms Fiona Bardon:
I forgot to say the last time that I am incredibly lucky that I have a family around me that is able to help me and to step in where I cannot do things. What about all the people who cannot read or write or research the resources that are available? What about the people who do not know how to complete forms or where to access services? These are the kind of things that are impossible without a support network. Coming home from hospital, a support co-ordinator is supposed to call to the home, but such people will not be able to get those kinds of services.
In terms of the blockages to employment, I am fighting so much to get better, and I feel every single time I get two steps forward there is a setback. You have to fight to get physiotherapy, speech and language therapy and occupational therapy. Then Covid came. It took me until February to get my speech and language and occupational therapy and then Covid came and there was nothing available. There was no Zoom back then. They were all scrambling to try to find everything and we were all on our own yet again. I thought, oh my God, I have been fighting for the past six months to try to get something and now it has all been taken away from me. It is frustration after frustration after frustration. It is unbelievable.
I have made an exceptional recovery. I have put hours of work into my speech, reading and crosswords, all the kind of things that help. When I talk to other stroke survivors, everyone wants to get better. It is not that everyone wants to get better to go off to Disneyland and pretend nothing has happened, everyone wants to get better because they want to get back to their normal life. We are not asking for massive things, we are asking to be back to the way we were, to be back to normality. Blockages are being put in place. It is kind of like, I put so much work and effort to get back to where I am now and you are now preventing me from moving forward. You are preventing me from getting back to what I have trained for. I went back to college at night time to become a teacher. I was working all day. I was doing college at night-time and at weekends. I did not become a teacher until I was 26 and then it took four to five years to become permanent. I worked for two or three years at my school and then I got sick. I was told I am not well enough to go back to work. I am at the point where I have something to give. As Senator McGreehan says, now that I have had this brain injury, I have way more understanding of the struggles of the children and I can relate to them.
I do not understand why you are telling me I am not good enough to be a teacher any more.
You are telling me that I am not good enough to try. If it is the case that I go in and after four weeks, it is too much for me and I cannot be a teacher anymore that is fine. However, at least that is a decision that I can make for myself. I can experience it and decide it is too much for me and then I can see what I can do instead. It may be that I can mentor teachers coming in or that I can for the National Council for Special Education, NCSE. I want to stay in education but it might be the case that I cannot still be a teacher. That is another massive change that I have to overcome emotionally. The lack of mental health services is just appalling. I said this earlier, but I am spending money that I had earmarked for my house, a house that I cannot afford because it is so expensive. My savings are going down and down because I have to pay for mental health services myself and I have to pay for my personal training and so on myself. There are little things. In a normal gym class the trainer might say to do 30 sit ups, press ups and push ups and run a lap around the room. If I do the 30 sit ups I might say what is next. Then I do the 30 press ups and say what is next. I am getting better all that but I am not fully recovered. You do get better over time and you are building up on those kinds of things but you just need the little bit of extra support. Anyone who has had a stroke, that I have spoken to at least, is not asking for, say, coffee machines that nobody else can afford. They are asking for handrails to be put into their house so that they can go to the toilet by themselves or for mental health resources so that we can overcome this massive thing. We have not done anything wrong, we just unfortunately had strokes and we want our lives to go back to as normal as they can be. Yes, life throws things at you. Everyone cannot get everything that they want at the end of the day and that is fine but then we are told that we cannot do things. Why can we not have services put in place so that we can instead?
Ms Mary Farrell:
Many of the issues that Ms Bardon raised are equally relevant to people with brain injury. I am struck by the experience of a relative in the UK. This was a young woman working in the Open University who had a brain bleed, which is the same thing. I am thinking of the support she had to enable her to cope, get services and to get what she needed to enable her to gradually return to work part time. The different types of work and so on comes into play and it may be easier in some jobs and responsibilities to gradually ease in than others. I cannot help comparing her experiences with Ms Bardon's and how good it was. The outcome speaks for itself in that she went back to work, and did so full time and made a very good recovery apart from her eye.
On advocacy, Fiona is a wonderful self-advocate and advocate on behalf of any others. It is wonderful to see people who experience these problems speaking on them, as we saw on television the other night. That was great. I was so pleased to see people who were themselves brain injured able to speak out and say, "This is my experience. This is what happened to me", because although people with a mild acquired brain injury may be able to do quite a bit, they never see the bigger picture. It focused on what they would need which would be very different to what a person with a very severe brain injury would need. The whole area of advocacy is very difficult. Despite all the different things that I have done in the past 30 odd years, my primary role has been as an advocate for our son. I am thinking of the time this takes. I have a room stacked up with files and box files. I moved some to the shed. I am afraid to throw out stuff because I never know how far back I will have to go to find something that is relevant and said, "Oh yes but you have said this, and this is what was going to happen." We go back and forth all the time. You are a constant advocate. You do not know when it is or is not going to end and who will take up the mantle when you are no longer able to do that. And not everyone has family to do that. Our situation is not the same as that of everybody else. I do feel for people who are on their own, struggling for this who are not able to get any information or be provided with proper discharge summaries and information. That is the same for ABI as with strokes or any catastrophic injuries. The person and the families do not feel as though they are getting anything by right. We return to the UN convention again. You do not feel as though you are getting anything by right; you are begging. You feel as though you have the begging bowl out, looking for something and that you are really very lucky if you get it. But you are not looking for something extraordinary; you just want this person to recover the extent that they are able to live their best lives and that the family can benefit from that. If the person has a better quality of life, then so too does the family. For parents in this situation, their income and everything changes. The dynamics of the family change. Someone has to be there and take responsibility, to go to meetings, reviews and follow-ups. I have been doing this all my life. You come home from work and then you are doing the other job. You would have to leave work to go and do something related to all of this. It should be a right. These people should have this by right. It should be easier to access these services but it is not. The scattered and fragmented nature of services around the country with one organisation doing a bit here and another doing a little bit there, is another issue when you are living in the wrong area. From my experiences and from talking to people, I know there are pockets of the country where, never mind broadband, they are not able to get therapists or anything. They cannot access any services. The provision of services around the country is appalling. The further someone lives from Dublin the more difficult it gets.
That goes back to the issue of transport, which I raised earlier. That is something that the committee needs to take on board. It comes into the cost of living with a disability. Ms Bardon touched on how that impacted on her at a personal level. From our son's perspective, it is awarded on the basis that a certain income will be returned annually so all the plans are based on that. Things change over the years. The needs of the person change. You find yourself in a situation where there is no money and the person is dependent on a disability allowance. This goes back to wards of court matters, which I do not want to get into. It is very difficult when you are straddling two horses. One impacts on the other. You would not be involved in the system if you did not have the brain injury. Back and forth you go. The cost of living with a disability now is huge. As Ms Bardon has found to her cost, there are many services that even if you had a medical card or all the money in the world, you cannot buy. I cannot go out and buy the services our son needs because they are neuro-based in a hospital where they provide services, both ABI and epilepsy. You tell me where is the neuro centre? We are fortunate that we are within travelling distance at approximately an hour. There are people living in counties Kerry, Clare, Leitrim and all sorts of other places. I meet them at the hospital and they have been travelling since 6 a.m. or something to get to these services. Even then, they may not see a consultant. They may see a junior doctor or someone else. They feel that they have travelled all that journey for nothing. It is very different since Covid but in regular times, they could be waiting there for two hours. In that time they have to get food, pay for travel, pay for car parking even if they have a disability. Just going to the hospital is a costly experience. They may be attending clinics regularly where there are different types of clinics for allied services for spasticity and other matters.
A person may not just be attending one clinic; it may be a matter of attending different clinics for different things. Some things have been done online more recently, such as psychology input, which has worked well. However, some things cannot be done online and people have to be there physically, which is quite difficult at the moment.
I will give an example of the cost of living with a disability. I forget the details so I am open to correction on this, but a person with a medical card is entitled to four chiropody appointments in the year. Someone who has a deformity of the foot due to spasticity, depending on the circumstances, might need to be seen every five or six weeks. It generally works out at ten visits per year. A person cannot straddle the two services. They cannot pay the HSE person to keep going to them and they cannot switch back and forth between the public and private so they end up paying privately for all those appointments. That is just one example but there are many different things they have to pay out for and the cost of disability is not factored in. I do not know how but something has to happen for people who are long-term disabled who do not have any possibility of returning to work. Some people received a settlement expecting it to carry them through for their lifetime, but that is no longer the case. These things will have to be dealt with at some level. They will have to be managed because it is so unfair on the person and it affects the quality of life they had and expected to have. Things like holidays, a weekend away or going to a concert are all gone now because they no longer have the income for it. If someone has a carer and needs the carer to travel with them, that is a double cost every time. Going out for a meal, a coffee or whatever is a double expense. If the person is in Beaumont Hospital with their carer and they pay €5 or for a coffee and a snack, they are actually paying €10. The committee will see what I mean about it all doubling up. Sometimes people might need two people assisting them, depending on what they might be doing, so that can be a treble cost. It is very expensive. People must have their services as a right rather than feeling they are looking for something extraordinary or charity. It is only very basic stuff that they need in order to get on with their lives as best they can.
Mr. Chris Macey:
I will make two quick points. On the mental health aspect, there are 3.8 psychology posts in the country for stroke patients in hospitals. That is for 7,500 strokes a year. There is virtually nothing in the community. We provide a bit of counselling and other organisations such as Headway Ireland and ABI Ireland do great work as well but there is very little provided. This is a brain attack we are talking about and it needs to be addressed.
We did some research with the RCSI on returning to work after stroke. One of the things we found was that employers want to help but they just do not know how. They do not know what to do and they do not understand the nature of the stroke on employees. Fatigue is a huge issue post stroke. It hits people like a brick wall and people tell say you just do not know what real fatigue is until you experience a hit at that level. Often people return to work not knowing that this is going to hit them really hard when they do and employers do not understand. They sometimes think people are swinging the lead when they are actually really struggling. We have done some case work on that and key worker programmes, where there is a liaison person between the person returning to work and the employer, can be helpful. That can straighten out a lot of things. There have been some pilot programmes over the years that have not been subsequently funded. The system knows what to do, it just has not done anything about it or invested in this area. We can see the loss of talent that comes with that and that is clear with Ms Bardon, for example. She can make a significant and important contribution to children's education and she is not getting the chance, at a time the Department of Education is looking for people and needs people. There are people there and they are not being accommodated.
I thank our guests for their presentations. It is ironic that this morning the Minister of State, Deputy Rabbitte, issued a statement on Ireland submitting its milestone first report under the UNCRPD. Lots of things are noted in the report about what is happening and there are also one or two notes on further progress that is required in law, policy and practice to give effect to the convention. I was just reading it there while listening to some of the issues the witnesses raised at a level that affects their lives. For instance, the stroke strategy has not been published and I have tabled a question to the Minister for Health this week asking when the strategy will be launched and published. More important, strategies are kind of a deflection for doing anything because a strategy sets out a plan but we never see the implementation plan or the finance to go with it. That is why oftentimes a strategy is called for, launched and put in place but it takes years and that means a number more years where money is not being spent. It is important that we call this out for what it is. If the strategy is to be published it needs to be published with the budgetary strength to give it effect and make sure it is implemented.
Going back to what Ms Farrell said about the experiences with her son, there is one thing that hits me. I come from a background in construction and when I get a set of plans the first thing I do is set out a programme on how to bring together all the different strands to make sure the building is it built. I start with the foundations and work up and get it completed and hand it over. Everybody knows what their job is. They are also reporting to one person, similar to a project manager, so everybody knows what is going on in the project. Within our health services and patient care I come across this issue more and more, whereby there is no central domain with all the information on a patient that everybody feeds into. It is a system that needs to be changed. How many people miss out because somebody did not know something or somebody came home from hospital after a stroke and nobody visited them and they did not know where to go for help after that? It is as if the day they leave the hospital the hospital thinks that is its job done and it is up to somebody else to take over from there. However, nobody takes over and, therefore, it is creating this huge frustration. It is a time-consuming and mentally challenging position for everybody in the family to try to deal with the person who has the disability. I have come across the same thing with people who have had strokes. They are initially treated in hospital or whatever and then they are signed out and told they can go home to their families and somebody else will take care of that. We have seen a lot of it and both Ms Bardon and Ms Farrell have articulated what they have been living through from their own point of view.
Ms Farrell has been at this for a long time and I am sure she sometimes gets tired of explaining it. My first question is for her in particular. Has she seen improvements, or did we regress because of austerity and fail to pick up the pieces since? Where does she think we are now compared with when she started out? It might be a tough question.
Ms Mary Farrell:
No, it is not. I was recently going through files looking for something and I found a letter I wrote back when I started out, almost 30 years ago. It is as relevant now as it was then. There are bits and pieces, pockets of services, that were not there previously. Headway, for example, which is based in Dublin, provides just a small number of day services. It is resourced for a certain number of hours per day and for certain categories of people. Not everybody fits in to it. It is about the people fitting in to the programme rather than the programme fitting the people. All this is still going on. People are told to go to Headway because it provides services for people with a brain injury.
The same is true of ABI Ireland. It has been seeking additional funding for case managers and that links in with the national rehabilitation strategy. The Deputy talked about implementation, but the implementation plan was published and we are still no further because Covid happened in the middle of it all. That is not an excuse or even a reason, given the strategy was published in 2011. ABI Ireland operates in pockets of services that were initiated locally, perhaps by a family or a few families coming together who said they needed to get something up and running. There might then be some goodwill at the HSE and the service will be brought in. It is never a matter of the HSE coming in and saying it will deliver something. It is always a family or a number of families in an area who get together and drive this through the HSE. It comes from the bottom up rather than being a national strategy from the top down, whereby we would know what everybody gets and needs, with different strands for different categories of injured people, a discharge summary, somebody to pick up the case when the person goes out into the community and an ABI case manager who will co-ordinate the other services that are needed and manage the person's case. That is not happening but it should be.
It is frustrating when I talk to people who have been discharged from hospital without any follow-up, most likely prematurely, given our experiences in the UK. It is still the case here that if someone can walk and talk, he or she is considered to have been rehabilitated in respect of a brain injury, but the real damage is underneath and does not come to the fore, as Ms Bardon said. It is only when the person goes home, having suffered a brain injury and stroke, and becomes aware of all the things he or she has to relearn that he or she had been able to do theretofore, not to mention work and so on. Even actions such as making a cup of tea or brushing teeth have to be relearned and no supports are in place to do that. It is very difficult and challenging.
The problems are the same as ever. More people are living after an acquired brain injury and, as a country, we spend a lot of money on saving their lives. There is a scarcity of beds in Beaumont Hospital and no additional beds have been provided. The National Rehabilitation Hospital has not been given any additional capacity either, even though the entire place was rebuilt. As an example of the waiting lists in Beaumont, our son needed to go there some years ago for a review of medications. His epilepsy medication was causing problems such as falls and so on. He had packed his bag and was waiting to go. He was told it could be some time that week but he did not know and it went on and on. A person with a brain injury does not understand. The frustrations build and stress is caused. I had to appear on television. Do members think I wanted to do that? Do they think I wanted to attend this meeting? I did not. None of us wants to be here doing this. It is awful that we have to go out and speak in public about our private lives. It is appalling. I appeared on the six o'clock news on television and told the world at large I wanted a bed in hospital for my son, which in any civilised country he would be entitled to. That evening, suddenly, he got a bed.
That speaks to what we have had to put up with and, based on what I am hearing on the ground, it is no different today. That is a serious indictment of the health services in this country in general, and the example I outlined related to neurological services. People from throughout the country vie for a bed in the national neurology centre but the beds are not there. The resources are not there and an adequate number of neurologists are not there. That is to say nothing of the people who cannot get a bed in the National Rehabilitation Hospital. There is a waiting list and some will never make it there. They will never that support and discharge Ms Bardon mentioned. It is appalling.
Mr. Chris Macey:
I echo something Ms Farrell said in response to the Deputy question's about the implementation of plans. We suffer from implementation deficit disorder in this country, particularly in the HSE. The national neurorehabilitation policy was published in 2011. The implementation plan was not published until 2019 and it was a framework for 2019 to 2021. One month remains and nothing has been achieved, and there has been no funding for it. As the Neurological Alliance of Ireland has stated, it has been ten years wasted for neurorehabilitation, which includes stroke and other acquired brain injuries.
Ms Fiona Bardon:
On whether I have seen improvements, some of the issues relate to the number of rules and guidelines to be followed by different areas of government, such as county councils and so on. I read recently on our Facebook group that a man had a stroke two years ago and has been in rehab on and off since. He has been given notice to vacate his council house because he has broken the rules of not residing at his property. He is being evicted because he was getting help to get better, and he will not have anywhere to live at the end of the month. This is just crazy. It does not make any sense. He has made all his payments and he had his friends and family check on the property when he was not there, and now he will effectively be made homeless. No special dispensations or exceptions are in place for people who need them.
When we were talking in our groups, we said Covid probably helped some of us in that life became much slower and there was less pressure to socialise. We were able to take a step back and have space, with less pressure on us. At the same time, Covid was also a great excuse for the health service to say it could not provide a support any more, and then the HSE cyberattack happened as well. It was almost a double whammy. When one service resumed, the HSE did not have access to files, which meant appointments were pushed back further. It has been probably seven months since I had any real support from the NRH, which is quite a long time, given I had to wait so long to get the services in the first instance, and it is definitely not just in my case.
I am aware I am talking about my story only. Throughout the country, there are many other people like me with acquired brain injuries or other acquired disabilities or who have been born with disabilities. Because I have made such a good recovery physically, I do not have the experience to be able to speak on behalf of people who have acquired physical disabilities. I do not really understand that part of the challenges they face every day. As Ms Farrell said, you almost have to embarrass people into giving you the services or embarrass yourself to get them.
That is not good enough. I feel that I have nearly had to become pushy to get the services I need. That is not me; it is not my personality. I have had to become a person I am not in order to just get better. The services that are required are not there. It is not in my nature to be like that, but if I am not like that I get passed over or overlooked. What about the people who do not have the confidence to do that or who do not say, "I deserve better and I deserve this type of support"? They are not getting that support.
Ms Farrell also mentioned that the services are fitting people into programmes, not fitting programmes around people. They are not differentiating programmes to suit everybody. That is probably because they have one programme and might have 18 patients. The attitude is to put everybody in that programme and even if half of them get support or something out of it, it is better than people getting nothing.
I meant to say earlier that friends and family obviously want to help. Initially, when you come home from hospital everybody is hands on deck. They are making meals and taking you to appointments. Unfortunately, for people like Ms Farrell, they cannot walk away from their family. They have a responsibility to their parents, nieces, nephews, sons and daughters. Most other people have to go back to their normal lives and they have more pressing matters to attend to. They might have their own family and their own personal worries. They have their own lives to live and they cannot be there for me or whoever to do everything I cannot do for myself. Over time, as your physical or mental needs reduce and you are able to speak up more as your speech perhaps comes back more, people see the stroke survivor as better. There is an expectation that because it has been six months or a year, you are better now. We are not better. We are not bound to be okay after a certain amount of time. The reality is that while I can hold a conversation and be here, I am exhausted. This is me done until next Monday or Tuesday. There is no getting anything out of me for the rest of the week. It does not mean that you can go back to work.
At the start, when I had to make my lunch it could have taken me nearly an hour to make a sandwich. Now, it takes me 15 minutes. That is a massive improvement. Some people might see that as great, but I am wondering, given it has taken that long to make my lunch, how long it will take me to make my dinner. You are going to put in whatever the easiest thing is to make the dinner. People do not realise that. Yes, I am able to make my lunch and my dinner, but I am exhausted after doing it. Just because I am able to write a shopping list it does not mean that when I go to the shop I will remember to bring the list with me. We all forget our shopping lists, but the majority of people will remember that they do not have this or that while we are not necessarily able to remember that type of thing. Again, as I have said repeatedly, it is the everyday normal tasks that people have been robbed of the ability to do. We need services to be put in place for us to be able to return to being able to do the mundane tasks ourselves, without being overpowered and without having the massive fatigue Mr. Macey spoke about earlier.
I thank the witnesses. It has been a fantastic couple of hours. I asked Ms Farrell if she gets tired of it at times, and Ms Bardon has just said it. After baring her soul like this today, it takes time to get her energy levels back up again. When we leave this meeting we are not finished with this, and I know the witnesses are not finished with it because they are living with it daily. I hope we will help to make our guests' lives better and to make family lives better, because many people's lives are affected when something happens and a member of the family acquires a brain injury. I know this and I have experience of it locally. The witnesses are a credit to themselves, their families and this country. It is beholden on us to take on board what they have said and, hopefully, we will try to progress things so there will be a co-ordinated approach and the problems they face are recognised and dealt with. Hopefully, the committee will do something to help our guests along the way. I thank them. I really appreciate their time.
I thank the members and, more importantly, Ms Bardon, Mr. Macey and Ms Farrell for their contributions this morning. I thank Ms Bardon and Ms Farrell for their personal stories about their situations and, as Deputy Canney said, for baring all to the committee and in Ms Farrell's case on the "Six One News". It takes courage, determination and commitment, which you have shown in abundance. For us, as a committee dealing with disability matters, it is very important that you have given the evidence, not just in your opening statements but also in the passionate answers you gave to various members of the committee over the past two hours. We will have to reflect on that.
We have been meeting the lived experience of people with disabilities over the past 12 months and hearing about the issues with resources, help and support for people with disabilities. We will have to continue to advocate on their behalf. It is only because of our guests appearing before us this morning for the past two hours and giving their stories and evidence, including the evidence given by Mr. Macey, that we are empowered to go further. Some members leave the committee meeting and go straight to either the Dáil or the Seanad and raise the issues that arise at the committee. I know from talking privately to members of the committee that they are very empowered by the evidence we are given each week. It is driving us to try to do more. Some members have said that it reflects very badly on the system heretofore, but we will certainly try to bring a spotlight to that. We can only do that through the witnesses' testimony.
I thank you. If there are any issues that have been raised this morning on which you wish to send us further information, please feel free to do so. I assure you we will reflect on it and we will advocate on your behalf at various stages. I thank the witnesses who have appeared before the committee and I thank the members of the committee, who are very dedicated to what we are trying to do and to advocating on behalf of people with disabilities and their families and on the lived experience. I also thank our team who are keeping the show on the road.