Oireachtas Joint and Select Committees
Tuesday, 8 November 2022
Joint Oireachtas Committee on Autism
Autism Policy: Discussion (Resumed)
Micheál Carrigy (Fine Gael)
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Apologies have been received from Deputy Jennifer Carroll MacNeill.
Before we start our business, I will read some formal notices and the Covid-19 code of conduct. All of those present in the committee room are asked to exercise personal responsibility to protect themselves and others from the risk of contracting Covid-19.
On privilege, I remind members of the constitutional requirement that they must be physically present within the confines of the place where Parliament has chosen to sit, namely, Leinster House, to participate in public meetings. I will not permit a member to participate where he or she is not adhering to this constitutional requirement. Therefore, any member who attempts to participate from outside the parliamentary precincts will be asked to leave the meeting.
For the information of the witnesses, I wish to explain some limitations to parliamentary privilege and the practice of the Houses as regards references they may make to other persons in their evidence. The evidence of witnesses physically present or who give evidence from within the parliamentary precincts is protected, pursuant to the Constitution and statute, by absolute privilege.
Witnesses are reminded of the long-standing parliamentary practice to the effect that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable or otherwise engage in speech that might be regarded as damaging to the good name of that person or entity. Therefore, if witnesses' statements are potentially defamatory of an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction.
We will begin with signing off on the minutes of our previous meetings. We will then have two sessions. The first, session A, will run from now until approximately 12.30 p.m. or 12.45 p.m. During session A we will consider animal-assisted intervention and therapy. We will then take a short break. Session B will run from 1 p.m. to 2 p.m. During that session we will hear more about the lived experience of families of autistic people.
At the request of the Working Group of Committee Cathaoirligh, we will endeavour to finish the meeting at 2 p.m. because another committee will be using the room afterwards. I propose that the usual arrangements will apply. Our witnesses will make statements for five minutes each, after which we will have questions and answers with members. Each member will have five minutes for questions and answers. If we have sufficient time afterwards members may be able to pick and ask more questions. Is that agreed? Agreed. Members will be called as per the circulated list. Is that agreed? Agreed.
The first item on our agenda is the minutes of our previous meetings. The question is that we approve the minutes of the public meetings held on 20 October 2022 and 25 October 2022. Is that agreed? Agreed.
The next item is the continuation of our consideration of autism policy. I welcome the witnesses to session A of today's meeting during which we will consider animal-assisted intervention and therapy. From Autism Assistant Dogs Ireland, AADI, we are joined by Ms Nuala Geraghty, CEO, and Ms Debbie Carr who is a parent and client of the organisation. From St. Joseph's Foundation - Liskennett Equine Therapy Centre - we are joined by Mr. Michael Hegarty, CEO, Dr. Barry Coughlan, principal psychologist, and Mr. David Doyle, project and services development officer.
This ongoing examination of autism policy gives the committee the opportunity to discuss animal-assisted intervention and therapy. Animal-assisted therapy, especially that involving horses and dogs, is and new and exciting area of research that is yielding positive results for autistic children. The committee wishes to learn more about these interventions, their benefits for autistic children, adolescents and adults and their current availability to those who wish to access them.
Before we hear from our witnesses, I propose that we publish the opening statements on the committee's website. Is that agreed? Agreed. I invite Ms Nuala Geraghty to make her opening statement on behalf of AADI.
Ms Nuala Geraghty:
I thank the Chair and committee members for the opportunity to address them today. We are here to ask for their support in having autism assistance dogs properly recognised as a vital and necessary support for people with autism and to recommend that our work in training these dogs be funded along the same lines as guide dogs for the blind. We receive no funding from the State. We need €500,000 per year to meet the real needs of children with autism and their families and to make a vital difference in their lives.
I am the CEO of AADI. Since 2010, we have placed 58 assistance dogs and 39 companion dogs with children with autism. This was achieved with a small team of staff and an army of volunteers. As I said, we receive no State funding. Hundreds of families reach out to us, but, with our current resources, we can only train 25 to 30 dogs per year. We need to be able to train at least 100 dogs per year in order to ensure that every child with autism who needs an assistance dog gets one.
This year we placed 19 dogs with families. It has been our most successful year to date. Because of the level of demand, we began to operate a waiting list. We had to close it in 2014 because it was oversubscribed. For seven years, families could not apply for dogs. After much work, we reopened the waiting list in 2021 and 30 dogs were allocated in under two minutes. However, 199 families who had applied did not get dogs. We need funding of €500,000 per year if we are to meet the need that exists. We are asking for €12,000 per dog we place. This will cover half the costs of training and aftercare provided by AADI. We are fundraising the rest. We urgently need the same recognition as guide dogs for the blind. I ask committee members to recommend to the Government that our dogs and their contribution are recognised as equal to and as important as guide dogs for the blind and the work they do.
The Minister of State at the Department of Health, Deputy Anne Rabbitte, visited our training centre last year. We have received a letter of support from Bernard O’Regan, head of operations of the HSE's disability services. An Taoiseach Micheál Martin met Cara Darmody and her father Mark, who will also appear before the committee, and he agreed that autism assistance dogs should be funded. We are still not part of the conversation of providing autism assistance dogs and support for children with autism.
Before I finish, I want to share a call we took recently from a mother who believes a dog would benefit her child but the thought of not being one of the lucky 30 families allocated a place on the list was too much for her. She will not put herself through the process only to be let down again by another support or service she cannot access. This was a new low for the team. We could not even offer her hope that one day her child would benefit from the support of an assistance dog as Aidan Carr did. Aidan’s mother, Debbie, will now tell the committee how her family's life has been changed thanks to the support of their assistance dog, Ghandi.
Ms Debbie Carr:
I have been a single mum to Aidan, who is now 21, from the time he was diagnosed with autism in 2003. I want to tell the committee what life was like for us in Aidan's early years. Aidan did not speak until he was six. He did not sleep and he did not toilet train until he was eight. He took medication to help him sleep, slow down his thoughts, help with learning and reduce his anxiety levels. Every day I tried to keep Aidan safe and calm and tried to keep everything the same and avoid change. Aidan would break plates and eat them, eat stuff he was not supposed to and try to climb out his bedroom window, which never went well. He did not seem to be able to understand danger and was constantly in and out of hospital. One night, I painted a black Spiderman mural on his bedroom wall. I fell asleep and did not hear Aidan paint himself head to toe in black paint. I was awoken by him in agony as the paint dried and he ended up in hospital on a drip. It was exhausting and I needed the help of my mother and father because Aidan did not sleep. Even with medication, we probably would get only two or three hours broken sleep throughout the night.
We applied for a dog from AADI but we did not hold out much hope of this making our lives better or even of getting a dog. We got Gandhi in May 2017 and Aidan made his first friend. They became inseparable. Gandhi would not let Aidan cross the road and definitely not leave the house, especially through windows. He pushes his whole body against Aidan and the pressure seems to work really well when Aidan is upset. Gandhi sleeps on Aidan’s bed with him. Over time, Aidan’s sleep medication was reduced and then the other medications came down. Gandhi attaches to Aidan and the child who needed everything to be the same and kept us prisoners in our own home due to fears of leaving and meeting strangers now goes to The Square, the gym and his autism services on his own with his dog, Gandhi.
Today I can have friends, I can go on a night out and I can even work part time while Aidan is out with his dog making a life as best it can be for someone with autism. These dogs seriously improve the quality of the life of the person who has autism and the family with autism to have a semblance of a normal life.
Mr. Michael Hegarty:
On behalf of St. Joseph's Foundation, I thank the committee for inviting us to meet it here this morning. I am the chief executive officer of the foundation. I have worked for over two decades in the autism spectrum disorder, ASD, and intellectual disability sector, from service provision to HSE management, and I joined the team in St. Joseph's Foundation earlier this year. I am joined by my colleague, Mr. David Doyle, who is our development manager with a special interest in alternative supports. He established St. Joseph's Foundation's very successful Liskennett Farm, which includes residential, respite and an equine therapy centre.
He also has personal life experience of special needs, which I am sure he will share with the committee.
I am also joined by Dr. Barry Coughlan, our principal psychologist. His area of interest is primarily focused on evidence-based practice issues pertaining to the identification, assessment and treatment of mental health issues in persons with intellectual disability and complex needs. Dr. Coughlan is also interested in the ageing experiences of adults with intellectual disability, deinstitutionalisation and community integration.
As a brief and high-level overview, St. Joseph’s Foundation was founded by the late Dr. Martin O’Donnell and several concerned members of the community in Charleville, north Cork, in 1968 as an alternative support service for those who had special needs but were not being supported by the mainstream health services. St. Joseph’s Foundation supports service users and their families throughout the north Cork and south-west Limerick area. While much has changed over the past 50 years, our core mission - to care - remains the bedrock of our foundation. It is because we have remained faithful to this core ethos that the wider community in north Cork and south-west Limerick continues to support our foundation’s work. We at St. Joseph’s Foundation support 1,300 children through our two progressing disability services, PDS, teams, and 500 adults through our residential, day service and interdisciplinary supports. Our service is provided by a loyal workforce of 500 personnel, including healthcare assistants, nurses, ancillary support staff, senior therapists and a dedicated administrative support team.
On behalf of Mr. Doyle, Dr. Coughlan, and those we support as well as our wider team in Cork and Limerick, I thank committee members for this engagement and for listening to what we can offer. I have borne witness - not just as I sit before this committee today, but over many years - to the genuine engagement by parliamentarians who wish to do good by those with special needs within our community and, in this regard, we are glad to share any support or insight we may be able to provide today.
Dr. Barry Coughlan:
I thank members for the invitation to come before the committee. I will build on what Mr. Hegarty said and give a brief overview of autism spectrum disorder, ASD, and the work St. Joseph's Foundation does in this regard.
As committee members will be aware, autism or autism spectrum disorder is a life-long developmental disability that can cause a wide range of challenges in social interaction, communication and behaviour. In our most recent diagnostic framework, it is defined as a spectrum condition that impacts upon all areas of functioning and has significant implications in the lives of those living with the condition. A diagnosis of autism not only impacts the child, but it has significant implications from a systemic family perspective, affecting parents, siblings and extended family members.
I am sure committee members will be aware that the prevalence figures are increasing. Many of our prevalence rates come from the Centers for Disease Control and Prevention in the United States. That figure currently stands at one in 44 children. The previous prevalence rates were one in 59 in 2018 and one in 68 in 2016. Therefore, the prevalence figures are increasing and there is significant international evidence to indicate that. Unfortunately, few data are available from an Irish perspective, and there is not a specific autism register. The prevalence rate is one in 65.
Autism is a complex condition with many comorbidities or co-existing conditions, such as emotional regulation, aggression, anxiety, mental health difficulties, cognitive difficulties and sensory motor difficulties, to name but a few. St. Joseph's Foundation offers services to both children and adults. From a clinical perspective, we are seeing increased levels of complexity among children and adults. There is considerable evidence that suggests there are significant differences in terms of gender. The current rates suggest that more males than females have autism, but that is under review.
There are many evidence-based strategies for autism, one of which is equine therapy, an alternative multi-modal intervention that involves utilising a horse to enhance the core impairments of autism. It involves activities in the presence of a horse, including mounted activities such as horse riding and hippotherapy, as well as non-mounted equine-focused activities, such as caring for the horse and grooming, etc. While existing research evidence is somewhat in its infancy, it is growing substantially. We now have a body of growing evidence that suggests its effectiveness. Evidence from existing literature indicates that equine therapy and equine-assisted interventions for individuals with autism are very promising. The same premise could be applied to other more complex cognitive behaviour therapies. The evidence is growing in that area. Even though equine therapy or equine-assisted interventions can be considered complex interventions, the volume of systematic reviews and other methodologically sound research on equine therapy is growing. Much of the research, involving systematic reviews, is reporting positive outcomes in a range of difficulties presented under the autism spectrum.
Liskennett Farm was officially opened in Granagh, County Limerick, in 2015. It is a horse-boy hub designed to enable children and adults with autism or intellectual disability to learn, play and express themselves in a stress-free, non-judgmental environment. It provides residential, respite and day services for adults with autism and intellectual disabilities and a range of equine activities for children with autism and intellectual disabilities, including accredited training, equine-assisted learning, equine care, animal therapy, horse riding and occupational work-like therapy.
I hope this briefing was of interest to committee members and we are happy to address any questions they may have.
Micheál Carrigy (Fine Gael)
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I thank Dr. Coughlan. We will now hear questions and comments from the members.
Catherine Ardagh (Fianna Fail)
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I thank our guests for coming before us today. The committee often hears very negative presentations, but both presentations today showed the benefits of autism assistance dogs and equine therapy. We need to hear more about this and see that more funding goes into both areas.
I have read and listened to the witnesses' stories, and I have heard other stories from parents about how having an assistance dog has changed their lives. They can go on short holidays and sort of live normally. It is upsetting to learn that AADI is not funded at all. I know many families who are disappointed because they did not get one of the organisation's amazing dogs. Members of this committee and I will personally champion the case for funding for AADI because it is so important. The benefit of having an assistance dog is immense.
My cousin's family has a little dog that they trained and they were looking for accreditation for it. The dog is such a help to their daughter and, much like a person's phone, they cannot go anywhere without it. The impact that specially trained animals have on the lives of children with autism and the whole family is amazing. It can be life changing. This would be money well spent by the Government. I am very happy to support AADI.
I note St. Joseph's Foundation is a HSE PDS hub. I know the HSE has come before the committee before and we have attended many meetings. Does the foundation experience the same issues with recruitment, retention and vacancy rates or is it bucking the trend? The foundation seems to have a good pool of staff.
Dr. Coughlan mentioned an autism register. We asked other guests who came before the committee whether they think it is a good idea to have an autism register or if it is better to have a disability register. I know there are two schools of thought on that, but I would like to know how valuable the witnesses think an autism register would be.
When the cystic fibrosis community put together a cystic fibrosis register the supports came because there were clear data to show that X number of children had cystic fibrosis. They then started building the units in the hospitals and life expectancy rates for children with cystic fibrosis went up. Some would say that was because of the register. I am interested in hearing the witnesses' thoughts on that. I thank them for taking time to attend.
Mr. Michael Hegarty:
In relation to PDS and the Senator's question about recruitment and retention, we are having the same issues as every other network team throughout the country. We have two teams in Cork north-west and in Cork north-east. Both teams are down staff in each discipline and we are finding it difficult to recruit. Something that is impacting our recruitment is the fact that we are a section 39 agency so there are pay parity issues, which I believe are being addressed. That is creating a difficulty for us and our teams are certainly down staff. We are down by possibly 25% to 30% of our workforce and the staff that are there are trying their best to plug that gap at this point in time. It is also fair to say that those staff are getting tired.
In relation to section 39 workers, there is a 33% attrition rate each year. The HSE and a number of section 38 organisations are pulling staff from us, so it is difficult for section 39 organisations in that regard. We know this is a national issue and Ireland's success in having full employment makes it very hard to entice people into the sector. While it is a rewarding sector to work in, at this point, and particularly since the end of Covid-19, many therapists, newly qualified nurses, healthcare assistants, social workers, etc., are now heading to Australia and Canada. When we do exit interviews with staff we hear that they are going to travel. We are now in a difficult space and we are hopeful that in the medium term things will look somewhat better. To answer the Senator's question, we are in the same boat as every other PDS team and it is very difficult.
Dr. Barry Coughlan:
With regard to an autism register, in terms of strategic planning and strategic development that must be based on data, not only for children's services but for adult services. I am very much in favour of an autism register. It is the way forward and data-driven services are the way to go. This is a complex condition and there are multiple layers and elements to it. We are seeing that not only in children's services, but when those children transition to adult services they bring with them lots of complexities and there are huge resource implications in that. The children we see today will be the adults of tomorrow so an autism register would be hugely beneficial.
Catherine Ardagh (Fianna Fail)
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Funding is the main criterion that has been raised but are there any other asks the witnesses might have? As a committee, we want to support them as much as possible. Many of us have children with autism and we would like to see our communities supported.
Ms Debbie Carr:
I would agree with a register for autism. It is not that we do not want to be lumped in with other disabilities, but that it is specific. There is a lack of services and we feel we are always fighting our corner. Throughout Aidan's life, we have been diagnosed within an inch of our lives, but we have never received services. We have only ever had diagnosis upon diagnosis. If there was a register showing that people had been diagnosed with autism, it would mean they would not need to be diagnosed again. If there were more facts and figures available on the number of children with autism - and adults because the adult services are atrocious - there would be more support and the funding could go into the areas that would be more relevant to what people need to lead a semi-normal life. As I said, it is a life-long condition and with the comorbidities, they will never have a normal life. However, they are not even getting the opportunity to lead a semi-normal life because they do not receive anything as they are unseen.
Catherine Ardagh (Fianna Fail)
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I have another question for Dr. Coughlan. There is an ongoing debate on neurodiversity but when it comes to autism, there are levels 1, 2 and 3. Those with level 3 autism require a huge amount of additional support. For a person with level 3 autism, the diagnosis is in my opinion, although I am not a doctor, very different from a level 1 diagnosis. I do not know if it is right for us to be discussing them together, although maybe it is because I am still learning. The needs of individuals with level 3 autism and level 1 autism are completely different. Maybe we are not having enough conversation about children and adults with level 3 autism. It sounds as though Ms Carr's son has level 3. My son has level 3 autism. These children and adults are different from those who are higher functioning. There is a debate taking place on whether we are focusing enough on children with level 3 autism, those children who have huge needs that are not being met.
Dr. Barry Coughlan:
I totally agree with the Senator that much more discussion needs to happen, regardless of the level of autism, whether that is level 1 or level 3. In my briefing, I referred to the comorbidity issue. Maybe of these young people and adults are presenting with comorbid conditions such as anxiety and depression, which are essentially masked by the very presence of the autism. These are in a sense a hidden population and very often these young people and adults only come to our attention at crisis points when it is probably too late for us to intervene. I agree with the Senator that the discussion needs to widen. As the saying goes, once you have met one person with autism, you have met one person with autism. On the Senator's point about individual supports, individualisation is the key, regardless of the level of the autism. It is a complex, lifelong condition and often we do not fully understand that the rates of comorbidity are exceptionally high. In preparing this briefing, I found that all the figures from the UK show that rates of suicide in young people and adults with autism are alarmingly high but do we see that in the headlines? Unfortunately, we do not. These are the places where we get to crisis point. That discussion needs to broaden and widen and we need to develop specific bespoke services around those regardless of the level of the autism.
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I thank the witnesses for appearing before the committee. I will start with a few questions on the assistance dogs. I am aware of a number of people who have an assistance dog. Yet, when I say an "assistance dog", I am not sure whether they are assistance dogs or companion dogs. I did not realise there was a difference between the two. However, I do know about the differences they have made to the lives of these people and their families. We heard that 100 dogs need to be trained every year. Is that an underestimate because we do not even have proper data on the numbers of people who have autism or disabilities of different types? Is it the case that people do not apply for an assistance dog because they know there is such a long waiting list? Ms Geraghty referred to a woman who did not apply because she knew she would probably not get a dog for years or maybe not at all. Is Autism Assistance Dogs Ireland the only organisation that trains these dogs? Does it do so on a national basis and is there outreach? The funding requested, €500,000, seems very small and I think it should easily be met. While I am not in Government, we would support it.
How does St. Joseph's Foundation fund its equine services and how many people use its services? Is this service offered in other parts of the country by other equestrian centres? If not, could it be offered to people in different areas? Is special training needed around it? It sounds as though both organisations do wonders, whether it is with dogs or horses.
Ms Nuala Geraghty:
On the figure of approximately 100 dogs per year, it comes down to the numbers registered and things like that but we are working off the number of emails and phone calls we get every day. That is how we work out our numbers. When we open the waiting list, we do a webinar. Everybody has to apply for the webinar. We held the webinar in August this year. Some 300 people attended. When we then actually opened the waiting list, 120 applied for an assistance dog. We go through the criteria at that stage so that applicants know whether a dog might be suitable for them. We had 30 places so there was a kind of lottery. We had to do a draw and pick out names so the other 80 people were left without a dog. The figure of 100 is probably a significant underestimate. We are not sure but that is what we would like to aim for. Irish Guide Dogs for the Blind also provides assistance dogs. Both of our organisations do this nationally. I do not know how many that organisation provides per year. It would be good to know.
Mr. David Doyle:
On the numbers, we produced 13,304 sessions in our equine centre last year. We have 25 horses. We provide services to 56 schools. I am talking about the special autism units within schools. This comes to 103 classes because some schools may have two or three classes. We take four schools every morning. Schools finish around 2 p.m. so we start at 10 a.m. and run different sessions between 10 a.m. and 1 p.m. When the children come for equine therapy, it is not just about coming to the centre to ride and groom horses. It is an experience. Even though the session lasts an hour, they can spend four hours at the centre. It does not matter. There are sensory walks and other animals. It is an experience. They have their lunch at the centre and there is music going on. We have drums they can beat and all of that. That is the sessions with the schools.
We obviously provide services to St. Joseph's Foundation residential and day services but we are also open to external agencies and parents can come themselves. We have open Saturdays for which booking is not required. The whole family comes to the service from 9.30 a.m. to 4 p.m. Not only can the child or adult with autism ride and experience the day, but the whole family comes too. Mam or Dad can ride. We find it to be a meeting place at which the whole family can meet other families in similar situations, which is of real benefit to them.
I am coming from my own personal experience because, as Mr. Hegarty has said, my own girl, who is 28 now, was diagnosed when she was four. She had three staff with her at all times. Services may be poor now but back then they were very poor and she was expelled from most schools. We ended up in a special school with St. Joseph's Foundation. Since then, new mainstreaming units have been set up. From our perspective, these have been really successful. The teachers, SNAs and other staff are highly motivated and we can see the difference. Because of equine therapy and other services - equine therapy is not an alternative but and additional service that helps - including working closely with psychologists, occupational therapists and physiotherapists, my daughter is now sharing a staff member. From a monetary point of view, as we are talking about funding, three staff members working 24-7 at a cost of €250,000 each per year costs a total of €750,000. To save two staff members results in very significant savings. The cost-benefit analysis is positive. I am only taking about her because she is all I am entitled to talk about here but we have seen other differences.
From a funding point of view, the HSE has funded some of our staff. We have three staff funded by the HSE. Our Saturday is funded by alternative respite services. We also have adult education funding from the education and training boards, ETBs. We get six days of help under the ETBs' adult programmes. We do not get any money for horses but we do not pay for them. They are all donated ex-racehorses, ex-show jumping horses and so on. It takes them approximately nine months to join our programme.
On the question of whether there are other services like ours around, Mr. Hegarty might follow up on that permission from the Government to open a new service in Kanturk, County Cork. It is a model of service that we are promoting. There will be a respite house that accommodates four children with autism and a residential house for four further children. These will be children on level 3, which the Deputy was talking about, who exhibit challenging behaviour. We excel at dealing with children with challenging behaviour. We have just got permission to start with that. We are hoping to apply for planning permission in the next week or two. We do not get money for horses. We get donations for that. The schools are great because, while we do not get money directly from the Department of Education, the schools run collections and so on.
Mr. Michael Hegarty:
To answer Deputy Tully's question on funding, most of which Mr. Doyle has answered, we do not charge anybody to use our services. Nobody is charged in St. Joseph's Foundation. We do not charge the schools or special unit classes when they come. If families wish to make a donation, we will take it and it will support us in providing our services but we do not charge people. Most of the funding comes from the HSE through its sports and recreation funding and we channel it to the Liskennett centre because, as Mr. Doyle has mentioned, the outcomes we are seeing are positive in respect of the cost-benefit analysis and some element of time-related savings also accrues from putting funding into this. The service we provide in Liskennett is unique. As Mr. Doyle has remarked, we hope to replicate that success with a children's alternative regional respite, residential and equine therapy centre in Kanturk. We hope that will open within the next 18 months. We have a waiting list for the Liskennett centre at this point. We hope that more vacancies will be created for children from that side of Limerick as the people who are travelling from Kerry and Cork take up placements in Kanturk. We have people who are literally travelling the length and breadth of the country, particularly on Saturdays when we run open days for which you do not have to book. We have a very significant number of volunteers on Saturdays. On any given Saturday, there could be ten volunteers providing 55 or 60 sessions. Those volunteers work throughout the week and, to their credit, many of them are retired employees of St. Joseph's Foundation. Liskennett has a special place in many of their hearts. One of the volunteers has told me that this is why it easy for him to go back. He enjoys it and gets something very worthwhile and very fulfilling out of it himself, even after spending a whole career working in the service. That speaks for itself.
I will refer to a question regarding a register for autism that Senator Ardagh directed to Dr. Coughlan a number of minutes ago. That should be easy to do because, under the Disability Act 2005, most people who are diagnosed nowadays come through the assessment of need process. The figures are there. I do not believe it would take too much time or effort to create such a register for this committee or the Department of Health to use. That is just my take on that matter.
Mark Wall (Labour)
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I welcome everyone, particularly Ms Geraghty and Ms Carr. I also welcome Gandhi; it is great to see him here. It just shows what is involved, when we actually see a real-life assistance dog. They are all very welcome.
I have a couple of questions. Deputy Tully touched on assistance and companion dogs. What is the difference between an assistance and companion dog? Is the latter just an untrained dog? I ask Ms Geraghty to go into some detail on that, if she can. As a dog lover, I know the benefit of having a dog. I have always had a dog and continue to have one. I have another question on dog breeds. These dogs seem to mainly be golden retrievers, as Gandhi appears to be, or Labradors. Is it just that type of dog that is used for assistance? It goes without saying, from my point of view and that of my party, we totally support the figure that Ms Geraghty put forward and, as has been said by colleagues, if more is needed it should be given. A large percentage of us are dog lovers, we know the benefits of owning dogs and we know how good they are as companions. I ask her to answer those questions in the first instance.
I also welcome Dr. Coughlan, Mr. Hegarty and Mr. Doyle. As I come from County Kildare, I am very familiar with horses. We have so many of them in the county. I am also familiar with a number of local groups, one of which will appear before the committee in approximately an hour's time, whose members have benefited from horse therapy. A number of local stables in County Kildare provide that service and, from visiting some of them, I have seen the benefit of it. I attended one or two sessions with those groups just to look at that benefit. My questions relate to the benefits the Liskennett centre sees when families come to avail of its service. This is something I also want to tease out later on. The centre's representatives mentioned the whole family coming. Is it an important part of the equine therapy St. Joseph's Foundation offers that the whole family gets involved? I do not want to use the word "isolating" in respect of the autistic person but the centre is bringing in the whole family to make sure everybody is getting the same experience. I ask for comment on that.
I have a further question for Dr. Coughlan and possibly Mr. Hegarty. Suicide and rates of suicide were mentioned. As far as I am aware, it is not a conversation we have had at this committee. I ask Dr. Coughlan to touch on that again because it is an important conversation for the committee to have. He also mentioned that, unfortunately, the figures and data for Ireland, and the research, are not as good as they should be. I also ask for comment on that.
As a finishing touch, I note from the presentation that the adult autistic person was mentioned. One issue we have touched on is how people can obtain jobs. I have read some of what Mr. Hegarty submitted. How does St. Joseph's Foundation help people to obtain jobs? It is so important for the autistic people I meet that they get out there and actually have a job in order to lead a normal life and existence. I ask Mr. Hegarty to touch on that.
Micheál Carrigy (Fine Gael)
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We will take the questions in the order the Senator asked them. Ms Geraghty or Ms Carr might respond first.
Ms Nuala Geraghty:
An assistance dog, like Gandhi, as members see, is a fully trained assistance dog. Such dogs have to be trained to a very high standard. We are part of Assistance Dogs International, which has to accredit us. It has just re-accredited us; we have passed that, thankfully. This is to make sure that the dog walks nicely on the lead and is not distracted by other dogs. We are trying to make parents' lives easier. We do not want to put a dog into the mix that will drag somebody down the street when it sees another dog or will drag a child across the road. The dog has to be trained to a very high standard. An assistance dog wears a jacket, similar to the one Gandhi has on, and is allowed public access. Gandhi can go into any public place with a child, a little like anybody in a wheelchair. It is the same sort of thing. The dogs that do not quite make the grade because the standard is so high we then place as companion dogs. They might be for children, as we talked about, at different levels of disability. A companion dog could be for a child with a level 1 disability who does not need the safety of an assistance dog.
Assistance dogs are used mainly for safety. Children wear a belt and are attached to such dogs so they are completely safe when they are out in public. They do not have to hold onto their mother's hand any more. They now have a little independence and can walk ahead. The mum or dad gives the command to the dog and the child can walk happily ahead. If a child starts to bolt, a parent has got that split second when he or she can hold onto the attachment and get the child back in place. It then allows the child to be able to learn to walk nicely with the dog. It also seems to reduce children's anxiety so that when they go out somewhere in public, it is a less stressful situation for everybody. Families have reported that they can go out as a family as opposed to going out in separate cars, taking one child in one car and another child in the other car because they have to come home early and so on.
On companion dogs, we have found that because dogs are brought up through our puppy scheme for the first 12 months of their lives we know them inside and out. They have been brought up in the home and have learned the commands. They are good dogs but might just have one thing that is not quite right. They might be a little too distracted by other dogs or they might have a health issue. These are the dogs that we place as companions with children who do not need dogs for safety.
On the main breeds we use, as members can see, Gandhi is a Labrador crossed with a golden retriever. This breed tends to be the most successful. We started our own breeding programme, again, as part of Assistance Dogs International. We joined up with its breeding co-operative. We do lots of sharing and swapping of dogs and so on to make sure we are getting the right breed lines for what we are doing. The Labrador, the golden retriever and the Labrador-cross golden retriever tend to be the best. When we breed, we cross the Labrador and the golden retriever to get the best success. These tend to be the best and most successful for us, although we have used other breeds as well. We are mainly looking at the height of the dog because it has to be able to walk next to the child and, if a child was to run, the dog is there as a bit of an anchor, while a parent gets a chance to hold onto the attachment strap.
Dr. Barry Coughlan:
I thank the Senator for his question on the mental health needs of this population. Suicidality is of concern. A number of years ago, I was involved in the complex needs project in the UK. One of the key themes that came out of that were the mental health needs of young people with an intellectual disability. As a subpopulation of that, those with autism or autism spectrum disorder were deemed at increasingly high risk, given the very nature of autism. While the figure was approximated at 40% of young people with an intellectual disability presenting with a mental health difficulty, if autism was present, that figure increased to more than 60% to 70%. We are talking about a very high-risk population.
Interestingly, the National Autistic Society in conjunction with YoungMinds, published a report last year. That report referred to the National Institute for Health and Care Excellence, NICE, guidelines, and particularly pointed out that this was a population they were extremely concerned about as regards risk and suicidality. Unfortunately, as the Senator alluded to, there are no figures for Ireland but if we embed that in the context of the Covid pandemic, which we have all been through, and understand the very nature of autism, which includes loneliness, isolation, etc., we are extremely concerned as healthcare professionals. Again, the discussion needs to widen not just in respect of autism diagnosis but that of the comorbidity piece. The language we use is "diagnostic overshadowing". These young people are often overshadowed and we do not pick up on them soon enough. It is very important.
Mr. David Doyle:
I will pick up on the point about families. We consider that to be very important. Our family open day is the most important day of the week for us. When a person is diagnosed with autism, it is really a diagnosis for the whole family. For us, it is about that meeting and greeting of other parents who are present and that they are not bringing their children to a centre to be fixed. The children are coming to have a sporting or meeting place. They come during the week for their therapy but Saturday is the day they come with their families.
It is also important because not only is the centre a place they can come to but also a centre they can go to out of hours. For me, as my daughter, Caroline, was growing up, we had other children we also had to be mindful of. If a tantrum was happening in the house, sometimes we had to take her outside. We spent hours driving and driving but we had nowhere to go.
Liskennett is a place that everybody has. If they are caught on Saturday, Sunday or at night-time and need to take somebody out, they can call in. There is a playground. The canteen and kitchen are never closed. That is what we are trying to promote. That is why it is really important. When someone has a tantrum and we need to go somewhere, they are used to being there. It is not that we are bringing them somewhere separate. In our case, we could not go to a park. They might pull the wing mirrors off a car or something like that. That is what we are trying to promote in Liskennett.
As for Kildare, we are building another place in Cork but we have also helped design a place in Kildare and one other place as well. I do not want to mention their names now. For small money, it is possible.
There are brilliant equestrian centres. Let there be no doubt about it. We are not here to promote the view that everyone with autism needs to go to a place like Liskennett. Our goal is that people will be able to go to their local community centre. However, some people need more support and help to get them to that goal and that is what we provide.
Mr. Michael Hegarty:
Senator Wall asked about people with autism spectrum disorder, ASD, working and what we do to support them. I cannot answer that question directly insofar as the criteria to access St. Joseph's Foundation's services for adults include a diagnosis of intellectual disability. That creates an extra layer of complexity. We have job coaches to support people in supported employment but they would be people with ASD and intellectual disability. I cannot give the Senator a direct answer in relation to ASD.
With PDS, we have people coming through with complex needs, perhaps solely physical or solely ASD or comorbidity. Once they reach 18 years, they will move on to other services as opposed to into St. Joseph's. Unfortunately, I cannot give the Senator a direct answer to that.
Joan Collins (Dublin South Central, Independents 4 Change)
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I thank everybody for coming in. It has been fascinating listening to the work they have been involved in, particularly the animal-centric approach. All the questions I had intended asking have been asked. I will pick up on recruitment and retention. St. Joseph's Foundation was asked if it is feeling the effects that services are feeling and we heard the service is down 25% to 30% on staffing and the staff are feeling the effects of that. It must be impacting everywhere, for example, in providing cover for people who are out sick and so on. In the short term, the staff in St. Joseph's Foundation are managing to maintain services owing to their work ethic, empathy and so on. As far as recruitment is concerned, does Mr. Hegarty have a proposal or an idea about how we get more people into the services in the longer term? Pay parity would make a difference, as would targeting students in secondary schools to go into therapy work and similar services. It seems that if we do not try to deal with this issue, it will only get worse, particularly for current workers in the services. We have seen advertisements around Dublin city and in other places from Australian health services that are recruiting staff here. That will cause more problems. How can the issue of recruitment and retention be dealt with in the longer term?
Having listened to Ms Geraghty and Ms Carr, I would support the funding request for dog therapy services, as I know everyone here would. It would be well worth investing €500,000 in training assistance dogs. Ms Geraghty noted that the Minister had visited the centre and that Bernard O'Regan from the HSE supports Autism Assistance Dogs Ireland. The Taoiseach has met Cara Darmody and he has said assistance dogs should be funded. It will be important for the committee to push the need for that money to be invested in the area.
Deputy Tully asked a question on the figure provided of 100 dogs. Autism Assistance Dogs Ireland cannot train as many dogs as it would like to for children and adults with autism. If the organisation received that investment and was training up to 100 dogs, there would be even more demand for the service because people would know they would be able to access it. That would have to be reviewed every couple of years. We should push a strong recommendation from the committee that this funding be given to the Autism Assistance Dogs Ireland.
Mr. Michael Hegarty:
I thank the Deputy for her question. We ask ourselves every day and across our service how we will manage this recruitment crisis. We are in a crisis and it is very serious. The staff, as the Deputy said, are working on good will and some of them are running out of steam. They have been through Covid, which we expected to last for three months, then six months and then two years but we are still on that road. They are finding it difficult and they are tired. I appeal to our staff to bear with us over the next period.
As for how we address it, that is a very difficult question. Yesterday, we met with a cross-section of staff from across our services, from healthcare assistants and nurses to those working in day services and residential services, to ask them what ideas they can come up with. We need to think outside the box. Deputy Joan Collins mentioned students. We are linking in with our local secondary schools to have their students do transition year placements in St. Joseph's. That will not solve the problem in the next year or two but perhaps some of these students will decide that entering health services in the voluntary sector to give back to their community could be a career option.
We will visit Munster Technological University, Cork and South East Technological University and all the colleges to speak to social care students and promote the disability sector as a place where they can have a career with many options and different pathways. Whether it is fortunate or unfortunate I am not sure, but we are a recession-proof industry. Our staff will be required no matter what happens. To some extent, we are trying to let people know that the jobs will be there in 12 months, two years, five years and ten years because unfortunately, as I said, people need our services. That is something we need to highlight to people.
It is a reality across our sector that we are now looking at international recruitment. We have to look outside Ireland and make Ireland and St. Joseph's Foundation attractive for people to come to. There are multifaceted issues in relation to that. There are housing and accommodation issues, visa issues, etc. Despite the complexities involved, we are in the process of recruiting internationally.
Micheál Carrigy (Fine Gael)
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Does Ms Geraghty wish to respond?
Ms Nuala Geraghty:
The Deputy is correct that if we say we can train 100 dogs a year, there will be more demand. However, it would be great to be able to get somewhere near and at least start plugging the gap. We are in the middle of a four-year strategy and we intend to be able to produce 45 dogs by the end of it. We have a solid foundation now where we have our breeding scheme up and running. Hopefully, we will be able to train 100 dogs, obviously with funding. We cannot do it by ourselves. We would be able to get somewhere near that five years after the current strategy.
Joan Collins (Dublin South Central, Independents 4 Change)
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I will make one other point.
I understand the point about the international situation and trying to plug the gap by recruiting from other countries. It is worldwide problem, is it not? Places like Australia are recruiting from Ireland, while we are recruiting from Third World countries that lack the staff they need for their services. We have to look at our own students and start thinking, as the witness said, outside the box on how to recruit people and make it attractive to come into the services and not be enticed away. Sometimes people want to go away for a year or whatever to travel for personal and work experience, but we need to recruit from among our own students coming through colleges and secondary schools to ensure that, in two or three years' time, we have staffing levels that could take the pressure off current staff. That may also encourage them to think about not leaving because we will have a better work environment and better pay.
Marc Ó Cathasaigh (Waterford, Green Party)
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I thank everyone for the presentations. As Senator Ardagh said, it is lovely to hear positivity, although I know the witnesses are outlining challenges as well. I will share another positive story that comes with challenges and caveats as well. I recently met Amanda Fox of Cara autism support services. I met her in the company of another young woman, who I will call "Sarah", even though that is not her real name. Sarah has a self-trained dog. It has added hugely to her independence; she was diagnosed with autism in her 20s, but she has now found an avenue where she can manage her stress and anxiety. She has another comorbidity, which Dr. Coughlan spoke about, as well as autism. Her dog has unlocked a world of independence for her in a way that was not open to her before. That comes with the flipside and there are challenges. I have a question about self-training of dogs. Sarah, as I am calling her, has a Quality and Qualifications Ireland, QQI, level 6 qualification in advanced animal science. She took that on herself. The dog is fantastically well-behaved; it was with us in the office. It comes with challenges because she cannot get the type of accreditation for the dog that would unlock other things. Is this another avenue whereby we could bypass the waiting listing? Clearly there would have to be accreditation as there is no way that could be done without having oversight and some way of checking the level of training. Will the witnesses comment on that?
I think everybody understands guide dogs for the blind. I have never heard a story about a guide dog for a visually-impaired person being obstructed going into a shop or accessing public transport or anything like that. Are autism dogs as well recognised? I see from facial expressions across the room that they are not. I have heard stories of people being refused access to public transport. If someone already has an anxiety issue, having to explain the situation to a bus driver while a queue of people wait outside in the rain will not work. Access to public transport is another aspect of independence.
Mr. Doyle spoke about the cost-benefit analysis. He is absolutely right. It is fantastic value for money, as I do not need to tell him, and the cost-benefit analysis does not capture the quality of life or independence in terms of people's ability to self-regulate that deep pressure and all of the other things the dog will pick up on such as anxiety matter.
On equine therapies, having looked at the website, this looks absolutely magical. It looks fantastic. What is the distribution like? We heard about Kanturk in County Cork. Are there other centres with a similar offering in other parts of the country? Being parochial, I am interested in hearing if there is something in the south east. Is there a service in County Waterford? Is there an opportunity to develop something similar?
Ms Nuala Geraghty:
We get lots of phone calls about self-trained dogs. People ring up asking if we can train their dogs or saying they have just bought a puppy. We do not have the staffing resources to be able to do anything like that at the moment, so we send them through Assistance Dogs International to see if there is anybody available. It is something we could look at further down the line. It would have to be very specific and the dogs would have to be assessed. There is also the matter of insurance. Our dogs come under our public liability insurance when they are out in public places, so at least they have cover. I am not sure how a self-trained dog would come under that. They need to come under some sort of umbrella for legislation and so on. There is not a lot in Ireland so it is good to have the Assistance Dogs International umbrella to adhere to as well.
On recognition, people phone us about a lot about incidents. We had one case recently where someone was refused access with the child attached to a public building on a family day out, which was very distressing. We follow up on cases like that. The apologies come but it is a bit late when a family day has been spoiled. Ms Carr may share one or two of her stories.
Ms Debbie Carr:
We have been refused access to many places many times. It causes a lot of stress to the person with autism. For the family, you have a strong backbone after having a child with autism. I have been abused many times because of my son's behaviour. For some reason, people think he is my puppet and not my child. It does not stress me as much. I will answer the question about the dogs being independently trained as well. I have had my dog since 2017. I have never left Autism Dogs; I have support from them. They are always there for me in the background. We have a Facebook page. Gandhi went to his foster parents and stayed there for a few weeks because he does not like the sun. He is a very fussy dog. We left him down there, which was great. It is like a family. When we got refused the first time it was from a shop. I phoned Ms Carr and she immediately phoned the manager and sorted it out for me.
Marc Ó Cathasaigh (Waterford, Green Party)
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It is not as immediately evident. With somebody who is visually impaired, that can be seen it straight away but we cannot tell with somebody with autism.
Ms Debbie Carr:
One solution could be media presence, such as advertisements. We have the blind dogs. It is very much there, it is open. We need more media presence on autism dogs. I have had instances where I have been in a supermarket in Dundrum with the dog attached to my child and people come right up to him in the middle of the two of us and start calling the dog and rubbing the dog. You cannot help dumb either, but if there was more media presence, it could help. Aidan is independent with Gandhi. It is great because I do not have to go to a lot of places he goes now. He was refused twice by Dublin Bus in the last few weeks. I did not contact Ms Carr because I knew I would be meeting her today but I sent an email to Dublin Bus explaining the situation. It is discrimination - Ms Carr backed me up. She gave me the laws that I can quote to anybody on discrimination if they do that. The good thing about Aidan being refused from the bus was that he was with the dog, so that automatically kept him calm. Unfortunately, it was lashing rain and he had to walk home. He has dyspraxia and comorbidities - he has everything.
It was a long walk for someone with dyspraxia. When he got home he was angry but not to the level I would have expected if he did not have Gandhi. Before we had Gandhi, we had to lock the knife presses so that Aidan could not get to them because of suicidal tendencies and the fear that he might hurt us. That is something everyone is scared to say. Autistic people physically hurt their families. It still happens but not to as great a degree. More help around that is needed for families. I have reached out and asked people to help us and I feel like they will help me when I am dead. That is great.
I would love to see more advertising explaining what this dog does and asking people to respect this dog when it is wearing a jacket in the same way as they would respect a dog for the blind. Even walking down the street, I feel that people are constantly saying "Look at the dog", and telling their children to go and pet the dog. They should not touch the dog. It causes me anxiety because I am thinking constantly "Please do not touch the dog". That is written on the jacket, which is great, but it needs to be advertised more.
Marc Ó Cathasaigh (Waterford, Green Party)
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I have to admit I was not aware of this until I met Cara and Sarah and they opened my eyes to it completely. My young fellow is mad about dogs and I would have been one of the people telling their children to go over and pet the dog. I will not do that now. It is certainly not in people's minds in the same way as it is for guide dogs for visually impaired people. Huge work needs be done around that.
Micheál Carrigy (Fine Gael)
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Representatives of Dublin Bus are before the transport committee as we speak. We met them before this meeting. There may be an opportunity for members who are also on the transport committee to highlight this issue or meet representatives of Dublin Bus. It needs to be highlighted to the company.
Dr. David Doyle:
I will respond to the Deputy's question about whether other services are available throughout Ireland. We would love to see more. We are certainly available to help people. Two services are working with us to see how they can get going. It is not that the St. Joseph's Foundation wants to expand but that we want to help others to provide the service. It is difficult to find people to do it because it is an experience. It is not about riding horses. The business of riding centres is about riding horses and they are successful but for us it is about communication and helping people to move on from what they learn in the equestrian centre and adapt it to the outside world.
To give an example, Caroline would not go into a room or tent with more than three people. That would cause another world war. She just could not cope with the anxiety that would come if there were more people than that in the room. This is why other equestrian centres do not do this. We used her love of a particular horse. The psychologists from the horse boy group at St. Joseph's Foundation came up with the idea of using that particular horse to do a demonstration. Some 400 people were at an indoor event one night and she went in and sat there for two hours, which was unheard of. The benefit of that was that three weeks later, she went to see The Coronas in The Marquee in Cork with 5,000 people. It is about using the experience and removing the anxiety of having to go into a crowd to be able to operate in the normal world. That is why it takes a special equestrian centre to do that, give the time required and to say we are not here to ride horses. It is more than that. If we hear of anyone in the south east, we would be more than happy to help them.
Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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I apologise for being late again this week. I caught some of the meeting on the monitor upstairs and I met Ms Geraghty with the Minister of State, Deputy Rabbitte, when she visited Cork. I do not know if that was earlier this year or last year but it seems like a long time ago. I was convinced that day when I met AADI of the positive impact that using animals such and dogs and horses can have on regularising the behaviour of young people in particular.
I am conscious that a number of my questions may have been asked so I will try to ask some that have not been asked. Obviously, these placement dogs do not live forever. If someone is lucky enough to get a dog from AADI and the dog is lost during a placement with a family, is the dog replaced for the person's life or how does the model work? My second question for Ms Geraghty is about referrals. Are dogs allocated on a case-by-case basis through an assessment of who needs the dog most or are they allocated by lottery? How are dogs allocated to families? I will come back to AADI about funding later as that is one of the crucial issues it is here to discuss.
I will ask the representative of the Liskennett Equine Therapy Centre about the therapies the centre provides. I am aware of a lady in Whitechurch who provides a service. Are these therapies prescribed? Perhaps that is the wrong word. Are they covered by the HSE as part of someone's service plan? If not, would the introduction of personalised budgets, or something like that, to give people a choice of therapies be helpful in accessing the centre's services?
Micheál Carrigy (Fine Gael)
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We might switch it around and ask St. Joseph's Foundation to answer first this time.
Mr. Michael Hegarty:
I thank Deputy O'Sullivan for his question about the HSE service plan. He asked whether it is covered. St. Joseph's Foundation receives funding for sports and recreation and we funnel a portion of it to Liskennett to support the services there. We are also supported by a team of volunteers there whose value we cannot express in monetary terms. From the service plan and our service level agreement, SLA, we have those posts shored up between community healthcare organisation, CHO, 3 in the mid-west and Cork area community healthcare. As regards it being part of someone's plan, the HSE does not direct an individual's care plan. It is down to individual organisations, such as the Brothers of Charity, the Cope Foundation, St. Joseph's Foundation or St. Gabriel's Foundation in Limerick, whether it becomes part of a person's care plan to take part in a session every week with us in St. Joseph's Foundation. It is not directed by the HSE whether it is part of someone's plan but it can be part of someone's person-centred plan.
Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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Does that happen already? Are people directed to Liskennett Equine Therapy Centre as part of their therapy?
Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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Does Mr. Hegarty have an approximate number of how many people?
Ms Nuala Geraghty:
On the lifespan of the dogs, they go to families fully trained aged approximately between 16 and 20 months and will work, if they are fit and healthy, up to approximately ten years of age. At that stage, we do yearly visits to make sure they are still fit and healthy enough to work. We offer a replacement dog, or a successor dog as we call them. It is not for everyone. It is assessed for each case individually. When the dog is coming up to retirement we discuss it with the family. If the family needs the dog, it will go through a reassessment and if the family passes that, it will get a successor dog and will have priority on the waiting list.
I touched a little earlier on the referrals. People or families just have to apply to us. At the moment we reopen the waiting list once a year. It has recently been reopened. People attend a webinar and at the end of that they receive a code to apply.
We open the waiting list and give a set time and date and people apply. There could be a couple of hundred people who apply but we only have 30 places because what we say is that we want to be able to give them a dog within 18 months of them applying and we do not want them hanging on. Then 30 places are allotted in a lottery and the people who are not successful have to reapply the following year. We have criteria, so age would come into it and the child has to be aged between four and 12 years and have an autism diagnosis to be a runner. We grade that, but once they get onto the waiting list, we do a phone assessment, and after that we do an assessment in the family home with all the family and we bring the dog along to that so we can assess the family's needs. Not everybody gets through the whole process but-----
Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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Is there a minimum age?
Ms Nuala Geraghty:
The minimum age is five because we want the child to be out of the buggy and walking. There is no point if the child is much younger because we want them to get the maximum use out of the dog and that the dog is used as much as possible during attachment walks most days with the child, if they can.
Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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Thank you.
Pat Buckley (Cork East, Sinn Fein)
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A lot has been covered. I thank both groups for what they do. It is fairly substantial and we can be critical of services a lot of the time but I am well aware of what St. Joseph's Foundation does and it is amazing work. We keep saying, as politicians, that a lot of these services should be based on needs and not on means, and when there is no charge for a service, it lifts a weight from family members. Even listening to the witnesses, I can see it is personal to them and they have a massive stake in it. The fact is they get back fourfold what they give and it is priceless. I was surprised by Ms Geraghty's story about the assistance dogs because I was at a fundraiser for one in Midleton a number of weeks ago so I was aware of the cost. We are supposed to read the budget submissions when they come in, but when the budget comes out, half a million is pennies in the modern day. If it is €12,000 per dog, there would not be a lot of change from €12,000 if a child or an adult were in a hospital bed for 12 months. There is the cost benefit as well as the actual benefit, which Ms Carr referred to about her own son and how he has changed. It is a case of how we can strengthen that. I hear what the witnesses said about awareness and I have seen a little more of the awareness on the issue, but the witnesses are dead right that the first instinct is to pat the dog because you feel safe. I was disgusted to hear how people can be treated on public transport or in a public space. When I was elected to the House in 2016, one of the first Bills I produced was a dog licence exemption Bill. It sounds very small but it was to deal with the fact that if someone had a guide dog, he or she did not pay the dog licence, but if someone had an assistance dog, he or she had to. I argued that was discriminatory and that these are not luxuries but necessities.
It is good that the witnesses have highlighted the suicide numbers, and that it is a critical point here. Recruitment and retention have been covered. I have tabled a parliamentary question on recognition to the Minister on behalf of Ms Geraghty, so we will wait for the surprise on that. We rarely hear about suicide numbers at the Joint Committee on Autism or even at a disability committee. If someone at the level 3 stage on the autism spectrum is not getting all the services, he or she will feel very isolated. When someone feels isolated, of course his or her anxiety levels will go up. That person will feel trapped and a knock-on effect is, and my wife always says not to use the line, that where there is an action, there is an instant reaction. It has an automatic effect on family members. It is the case, one would say and I always say, that in the mental health area, and it should be the same with autism or any kind of disability, sometimes a problem shared is not a problem halved but is in fact a problem doubled, because as human beings we are reactive, and if parents cannot automatically or immediately sort out the anxiety or trouble, it affects them as well and their child will see that.
This committee is very non-political and most of us here have a stake in it one way or the other, but if we can assist in any way we will. Fair play to witnesses for attending and highlighting the issues, telling their stories and being frank about it. I see their frustration. They have our email addresses and we work collectively. I have been taken aback today because a lot of this is a very good news story, no matter how difficult. People have to get to the stage where they can access the service, but once they can access it, there are two models of consistency. We have the proof it is working and I cannot understand why we cannot push that and replicate it throughout the country. If something is working, pilot it somewhere else and do the same thing over again. The problem we have is we put the same ingredients into the same pot and get the same mouldy cake, and we scratch our heads wondering why it is not different. If we keep doing the same thing over and over, it will not change, but if there is a right model, it should be replicated. It has been a pleasure to listen to the witnesses and it has been enlightening but also exciting. I certainly will help in any way I can.
Mr. Michael Hegarty:
I thank the Deputy for his comments and it is certainly a good news story. We do very good work at the St. Joseph's Foundation. We are committed to it and passionate about it, none more so than Mr. Doyle who is alongside me. He is an extraordinary human being to say the least. As the Deputy has offered to give help whenever we need it, we will take that up and there is no doubt about that. We would like to welcome this committee to come to Liskennett to see what we do in St. Joseph's and experience it first hand. We would be honoured to bring the committee members down to show them Liskennett.
Pat Buckley (Cork East, Sinn Fein)
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That is your first official invitation, Chair.
Micheál Carrigy (Fine Gael)
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I got one from Mr. Doyle already. We will move on.
Joe Flaherty (Longford-Westmeath, Fianna Fail)
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I apologise to the two groups that I was listening from the office as I had a group visiting this morning. I have heard the speakers and it is heartening to see the work. For us as politicians, the great asset of this committee is that we see first hand the work that is being done. We are also conscious, however, that there is a lot more to be done. I was particularly interested to hear the work Ms Geraghty and Ms Carr have done and to see its positive impact, and similarly with the work in equine therapy. I am aware from my background of the benefits of equine therapy. What is Ms Geraghty's and Ms Carr's funding and, where is it coming from at the moment and is it all charitable funding?
Joe Flaherty (Longford-Westmeath, Fianna Fail)
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What does it cost to run the group for a year in terms of operational costs and numbers?
Joe Flaherty (Longford-Westmeath, Fianna Fail)
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Would the half million euro sought allow the group to scale up or would it just keep it at the numbers being done at present?
Joe Flaherty (Longford-Westmeath, Fianna Fail)
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That is very good. Where in Europe would the witnesses point to that works well in terms of a comparable model and has been embraced by a government?
Ms Nuala Geraghty:
There are many different schools. The girl who accredits us for Assistance Dogs International has a school in Belgium. They do not do not autism dogs but they do assistance dogs for children in wheelchairs or with disabilities. They are funded by the government for half the cost of the dogs, and I believe they get €7,500 per dog. That might be a good model.
Joe Flaherty (Longford-Westmeath, Fianna Fail)
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Is that in Belgium?
Joe Flaherty (Longford-Westmeath, Fianna Fail)
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In terms of animal welfare, when things go wrong does your organisation have provisions in place?
Ms Nuala Geraghty:
Yes. Each family signs an agreement at the end of the training where they agree that the dog has to be minded. They first go through a week of training. They come to us and they train with and learn about the dog before they take the animal home. After that, we follow up with them in the home environment doing what we call aftercare. We do the attachments with the dog, so there would be four or five visits soon after the dog goes home. Then we would follow up on a yearly basis to make sure that the dog is being well looked after regarding weight and grooming. Obviously, the dogs are ambassadors for the charity so it is important that they are kept well. It is important that the dogs work well and that they are not stressed. Later on then as a dog gets older we would check if it still able to cope with the workload. The welfare of our dogs is very important to our organisation.
Joe Flaherty (Longford-Westmeath, Fianna Fail)
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To look at one final negative, I always say that if the dog dies in our house, I am moving out for a week as I do not want to be there for it. In this situation, however, it has to be very problematic. Does your organisation provide additional supports for the family when this happens?
Joe Flaherty (Longford-Westmeath, Fianna Fail)
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Yes, because one can imagine there would be a huge dependency and a huge attachment on the part of the service user.. It will be very pronounced. I struggle to get my children to walk the dog but still there would be huge trauma if anything ever happened to it. It is important and it would be something to look at. Hopefully we can secure the funding and I would like that to be a key part of it.
Ruairi Ó Murchú (Louth, Sinn Fein)
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Earlier on, a couple of things were set in train that need to be followed up on. That is the thing about the necessity of the autism register. We all know the difficulties that exist in relation to diagnosis. I also get what Ms Carr says, in that a person is diagnosed as autistic and that is not going to change. Sometimes we have an element of madness whereby we need an updated diagnosis on something that has not changed. We all know that is a wider issue but there is a sufficient amount of information and that just needs to happen.
We could go over and back in relation to those Centers for Disease Control and Prevention, CDC, figures. I think the generalised figure is one in 65 in this State at present. However, anecdotally we all know from seeing kids coming through that the numbers are greater and greater. There is obviously a necessary piece of research that has to be done in that regard.
I sit on the transport committee and it is dealing with an issue that largely pertains to the fact of bus services in Dublin. I had stepped out so I will make an attempt to step back in afterwards and I thank the Chair for making sure I put that on the agenda.
I have found personally that people have become a lot more understanding in wider society. I get there are still issues, such as people coming over and petting the dog and I think that is a check for all of us. We get the idea of self-regulation and the absolute benefits for all the witnesses around that. The idea of use of movement and the relationship with animals is interesting. My own son has his moments, as I call them, which really can underplay what that looks like. What struck me was the fact that there was a calmness, as you say. I myself would be fairly miffed if I could not get on a bus and had to walk back and I might slam a couple of presses myself. The fact that there was anger and containment on some level sells the idea of the assistance dog.
Is there a greater level of societal awareness while accepting that there needs to be greater level of an insistence on best practice being operated, whether it is Bus Éireann or anybody else for that matter?
Then beyond that, funding is on the agenda. I imagine that at the point in time when we deal with funding, more people will realise this is out there and the numbers we are dealing with are not the numbers Ms Geraghty spoke about earlier.
On the references to sports and recreational funding, could the witnesses explain what they mean? Funding often works on an ad hoc basis across the board. It is never multi-annual and it is never where it needs to be. You seem to be very reliant on volunteerism and as sound as that is, I do not know how sustainable it is in the long term.
Ms Debbie Carr:
Yes, a lot more information needs to be put out there about autism in the public, not just for the businesses. As a parent of a child with level 3 autism, it means there is screaming from him and even some of my friends make comments to the effect that there are too many kids who are autistic now and they simply call it bad parenting.. I look at them, while asking are they really making that statement to me.
Ruairi Ó Murchú (Louth, Sinn Fein)
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Is that not usually followed up by, "I don't mean you"?
Ms Debbie Carr:
They may say they are not talking about me but they could be talking about one of my friends because autism families stick together. Yes, I think a lot more education could be provided. There is a lot of money spent on psychology and psychiatry. We have been diagnosed so many times for speech and language, cognitive, everything. If I feel my child has changed on the spectrum, then I could request a new diagnosis instead of these constant diagnoses. It can sometimes feel like parents are being pacified on the grounds that they have been spoken to and something has been done for them. The point is that no, nothing has been done as the parents already knew this. The money spent on that would be better spent on education and more therapies, a lot more help with the psychology and a lot more help with the child.
My child has had depression. He has had suicidal tendencies. He had a criminal incident against him. He did not get any therapy for it because he is autistic. That is very frustrating. Apart from his autism, he is a human being and he is entitled to have other things happen to him in life that he may need help on. There seems to be ignorance within the HSE in respect of dealing with people who are autistic. I don't just mean the general public, I mean people who think they have got knowledge on autism need to be more aware of other things that happen in life that people deal with.
I would like autism to be a lot more public. It still feels hidden. I used to be very jealous of a friend of mine who had a child with Down's syndrome. I used to say they can see it and I wanted to get a t shirt with my son's picture on it and a caption saying "I've got autism". Often people who do not have a child with autism can get caught up with not labelling them. I feel like asking them to please label him, because it will take so much pressure off him and me to perform in society the way they expect normal people to perform.
Ruairi Ó Murchú (Louth, Sinn Fein)
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There are still big steps to go but would you say that more people realise there is a considerable number of people with autism and to a degree, you do not always get the negativity you would have got even a couple of years ago?
Ms Debbie Carr:
As I think there are more people with autism, I think more people are touched by autism, which gives them no choice but to have some knowledge about it. Despite that knowledge, I believe a lot of people still think it is poorly behaved people or that parents are blaming the autism. I do not let my son away with anything. He has to follow rules and I agree with that but if he acts out, people are terrified and they have to be reminded that he has autism.
Ruairi Ó Murchú (Louth, Sinn Fein)
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Ms Carr terrified me with the paint, so I will be leaving no red or blue paint around
I had just got a beautiful new champagne carpet laid that day.
Ruairi Ó Murchú (Louth, Sinn Fein)
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Yes, I understand what happened there.
Micheál Carrigy (Fine Gael)
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We are running tight on time. I want to bring in St. Joseph's.
Mr. Michael Hegarty:
I want to address the question relating to funding for sports and recreation. We have a large service, so it is not just equine therapy we are providing. We have 18 residential centres. We have 28 day service centres and hubs, and a multidisciplinary team, MDT, spread across south-west County Limerick, and north Cork. We get funding from the HSE towards sports and recreation and through our physiotherapy department to keep people fit. We have residents too, so we funnel some of that money over to the equine therapy. We have one dedicated post specific to equine therapy funded by CHO 3.
Ruairi Ó Murchú (Louth, Sinn Fein)
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That is it, but the funding has been redirected.
Ruairi Ó Murchú (Louth, Sinn Fein)
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You have autism units and everybody that is directly accessing the services because they have seen the benefits.
Ruairi Ó Murchú (Louth, Sinn Fein)
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I could go on for an hour but I think I have already taken up too much time,
Micheál Carrigy (Fine Gael)
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I thank both groups for the work they do, and have been doing, supporting families, children and young adults over many years. As a parent, I have seen the benefit of equine therapy for my son. That is what led me to contact Mr. Doyle. I have seen the benefit that doing occupational therapy on horseback has given my son. The improvements he has made have been immense. I am amazed, as I think are other members, at the service down in south Limerick and north Cork. It is something we would like to see replicated throughout the country. I know I would like to see that service available for families. As has been mentioned by Deputy Buckley, the fact that it is free but that parents can support it voluntarily with donations, takes away the issue where some families cannot afford to go privately to get the therapy. To be able to provide that free of charge to that number of kids and schools in the region makes me quite jealous of what is in place down there. We spoke about filling posts and the reality is that there are 830-odd fully funded posts that are unfilled because we do not have enough qualified people coming through the education system.
In two weeks time we will have the Minister, Deputy Harris, and representatives from Trinity College and Dublin City University, DCU, here. We look forward in particular to hearing from the Minister because it is important to see if the Department has engaged with the HSE to make sure there are enough qualified people. I do not believe they have done so. The courses are there in the first place to make sure we have enough qualified occupational therapists and speech and language therapists coming through the system. We need to know what alternatives they are looking at now. We cannot wait five years for those staffing levels to come through. Something needs to be done, whether people move from the teaching or nursing professions into speech and language, and a one year course is put on to bring them up to accredited level so they can actually work in the system. I spoke to Mr. Doyle by phone a couple of times when I was looking at this and I contacted a number of people down there. They spoke glowingly about what has been done not just in the last number of years, but probably over 40 years to build that service from the foundation up. He speaks with passion as a parent, as does Deputy Ó Murchú. As a parent myself I am passionate about this, as are all the members of this committee. We want to see positive changes made. I hope that our recommendations when we produce the report in March 2023 will be implemented by Government over time. That is something incumbent on all of us, or on those who succeed us. I hope we will all be here for a long time and that those changes will be made, and will be positive.
With regard to autism assistance dogs, that is something we looked at ourselves. We tried to train a dog, if I can put that term on it, but we did not succeed. I pay tribute to the work done in this area, and I think the whole committee would be fully supportive of it. The sum of €500,00 is a very small ask to provide that service. As the transport committee is sitting, Deputy Ó'Murchú, I think that is something we can bring straight to Dublin Bus today. It is not acceptable to any of us. It needs to be highlighted and addressed.
Ruairi Ó Murchú (Louth, Sinn Fein)
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I am going to listen to the opening statement now and run back in, and tell them that when I said someone was subbing for me, that it was kind of true and kind of not true. We will see what we can do, as soon as possible.
Micheál Carrigy (Fine Gael)
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I want to go back to the funding for Liskennett. I know money is there for sport but that is not the reason that money is there, and it has to be funnelled towards sport. Is there any direct HSE funding coming for Liskennett in particular? I know there is a post.
Mr. Michael Hegarty:
There is one directly funded post, so that is approximately €50,000 direct to Liskennett for the equine therapy centre and, as I think Deputy Ó'Murchú said, volunteerism only lasts for so long. The cost of running it is about €200,000 per year, because we have four staff working there. We are funnelling some through, and we have one directly supported. If we were to put the volunteers and their number of hours in there too, it is most likely around the €600,000 mark if we were to value the volunteerism we have in north Cork and south Limerick.
Micheál Carrigy (Fine Gael)
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For €600,000 all in, and with volunteers, 13,300 odd sessions have been provided for kids and young adults.
Micheál Carrigy (Fine Gael)
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Families too. What has been said about the centre being open at the weekend and being able to go into the kitchen or whatever is fantastic.
Mr. Michael Hegarty:
It is open, and last year we opened on Christmas Day for a family who needed it open, because the disruption from Santa's presents being opened for some people in the house meant one of the children had to be decamped so that everybody could enjoy Santa. Mr. Doyle opened it on Christmas morning for two families.
Micheál Carrigy (Fine Gael)
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That is amazing. As I say, when I spoke to Mr. Doyle I felt the passion in his voice over the phone for what he does. He has to be complimented on that.
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I would like to make a short interjection. I know it was said that the horses are donated. Is it just individuals that donate?
Mr. David Doyle:
It can be anything. They can be ex-racehorses. It is hard to get the right one. We follow a horse buying programme, so we have 25 ponies and horses, from ex-racehorses to ex-show jumpers, to one horse that changed hands for more than €1 million. It is of no more value to have than the batty pony. They go through a training programme of about nine months, and I suppose that is why when we were looking, and other people were expanding, we said we would help them with that side. It is important, and it is also important from an equine rescue situation. What happens with ex-racehorses? People might not consider us, but up to now we have had three ex-racehorses, which have won a substantial number of races. They have worked out really well. We have the same meas on the batty pony that we take from the rescue people. Not all of them make it is what I am trying to say, and there is a nine month period before any child or adult gets up on one. However, there are plenty there.
Micheál Carrigy (Fine Gael)
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I think your offer is something we would consider. It is something very worthwhile for both groups. The benefits are there and can be seen. It is a very small financial ask in the bigger scale of things.
I will give each group 30 seconds to make a final comment before we finish.
Mr. David Doyle:
Back in the early 2000s there was a policy on enhancing the partnership and it was about a partnership between families, the HSE and service providers. We all got together and to provide a service you need a full partnership. When the HSE came on board that became viable and it was the master in a way. This is my personal point of view but we need to go back into a partnership approach between families, the person with the disability, the service providers and the Government. It needs to be a partnership; it takes a whole village to rear a family and provide for a person with autism.
Micheál Carrigy (Fine Gael)
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I thank our witnesses for coming here and for their contributions. It has been extremely beneficial for all of us as members and it is important that they get to highlight what they do to help the public and to highlight the issues. Deputy Ó Murchú will take that issue up with Dublin Bus straight away.
We will suspend for five minutes to allow for our second session with new witnesses.
Micheál Carrigy (Fine Gael)
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I welcome all the witnesses for the second session of our public meeting. For the information of the witnesses, I wish to explain some limitations to parliamentary privilege and the practice of the Houses as regards references they may make to other persons in their evidence. The evidence of witnesses physically present or who give evidence from within the parliamentary precincts is protected, pursuant to the Constitution and statute, by absolute privilege. Witnesses are reminded of the long-standing parliamentary practice to the effect that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable or otherwise engage in speech that might be regarded as damaging to the good name of that person or entity. Therefore, if witnesses' statements are potentially defamatory of an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction.
From Special Needs Action Group Athy I welcome Ms Geraldine Murphy, chairperson; and Ms Deirdre Archbold, treasurer. From County Tipperary, I welcome Ms Cara Darmody, who is 12 and I believe the youngest witness to appear at an Oireachtas committee, and her father, Mr. Mark Darmody. Before we hear from the witnesses, I propose that we publish their opening statements on the committee website. Is that agreed? Agreed.
The committee is grateful for the witnesses' taking the time to meet us today. We are interested in hearing the experience of parents of autistic children. The committee looks forward to hearing their views on support for autistic children and adults. We are interested in discussing issues relating to assessment, therapies, education, employment and anything else they may think is relevant. I first call on Ms Geraldine Murphy to make her opening statement on behalf of Special Needs Action Group Athy.
Ms Geraldine Murphy:
I am grateful for this invitation to attend the committee meeting to discuss services and supports for our children and young adults living with autism. The Special Needs Action Group, SNAG, in Athy was established in 2015. Its focus was to offer a fun outlet for children living with additional needs and their families to participate in fun and games in a safe and non-judgmental environment. Unfortunately, in today's society, there are many rules and regulations and expectations for young people when participating in games, but our focus is not just the rules and regulations. It is about how these young people can socialise among their peers and family members in a non-pressured and fun environment. During these interactions, the young people living with additional needs or their family members can develop or gain a visual understanding of each other's needs. We gently encourage all members to participate in a game or as many as they can, which in turn, will develop team-building skills.
I have been asked to speak on behalf of the parents from the group with issues that concern them. Parents are finding it very hard to get access to or contact a service team. Some parents do not know who their key support worker is. They are often not made aware of any changes to their children's support team, which can greatly stress a young individual living with ASD.
The disability team does not have a psychiatrist at the moment and has not had access directly to one as far as we are aware for many years and it is difficult to find medical support for children with ASD. This is extremely distressing for our parents as many of our children may have additional mental health issues that can go untreated. It is also vital to have access to a psychiatrist for sleep issues. It is widely acknowledged that many children with autism have trouble with sleep and a prescription for melatonin can only be prescribed by psychiatrist or paediatrician. To many of our parents, melatonin is a life saver.
Ms Deirdre Archbold:
Many parents are concerned that responsibility for speech and language and occupational therapy have been placed on them. They feel a one-off course here and there will never be adequate to support a child as it takes a professional between four and six years to assess our children correctly. Many parents are using their hard-earned money and health insurance to pay for one-to-one services, but they feel they should not have to pay for a service that should be provided for their children. In addition, any single parents do not even have this option as they are on their own.
The respite services in Kildare are stretched and it may take more than three years before a parent hears of a place available. Parents feel very restricted and believe their other children are missing out because the main focus is on the child with the additional needs, which may include routine or day-to-day supports and appointments. Many parents living with a child with an additional need will say how important routine is and how detrimental it can be on the child if it is not followed. For a parent to get respite services for the child, it would give them the greatly needed extra time to spend with their other children to make memories and build a relationship, taking away the "mum guilt" all parents feel when they have children with additional needs and siblings who get left a little bit behind.
It has also been brought to our attention a parent had a child in a local crèche and the child was accepted into the crèche knowing of the child's additional needs. However, after a few weeks, the crèche contacted the parent and said that the child's aggression and behaviour had gone out of control and they were unsure how to control and manage this behaviour. As the calls continued, the parent ended up removing the child from the crèche. She had to leave her job and stay at home with her child. Unfortunately, the system did not support her in any way because her partner was working and earning a decent wage. She was not entitled to any sort of support except for domiciliary care allowance. Her question is: if an individual is caring for a person, why is it being means tested?
It important to note that a family receiving disability allowance will not be entitled to the fuel allowance it there is someone working in the household. It is normally vital that the heating be on longer for our children's health as many of our children have additional health issues. At this time, it is extra hard for parents with the rising and already exorbitant price of fuel.
As our children turn into young adults it is an extremely stressful time as we are left in limbo about what is available and suitable for our children. We are only made aware of options for after-school services in the February of the year they are leaving school. It is even harder for the parents of children with a milder diagnosis as the options seem to be even more limited.
As a parent of child with special needs, I know there are inadequate services. We are told services are available, but when we look for them, we are either not answered, or else we are told that we missed the deadline.
A parent has been informed that there is no residential home available for her child. Another issue that parents have to face is what will happen to our children if something happens to us or when we are no longer able to care for them ourselves as we cannot expect their siblings to shoulder the responsibility and it is even more worrying for our single parents.
I again thank the members of the committee for this opportunity to speak on behalf of our children and their parents.
Micheál Carrigy (Fine Gael)
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I again welcome Cara and Mark Darmody. Cara is the older sister of two autistic boys aged ten and five. We are pleased to give them a platform to discuss the experience of being a parent and sister of autistic children.
Mr. Mark Darmody:
It is the greatest honour of our life to be here today. My name is Mark Darmody. I am married to Noelle and we live in Ardfinnan in County Tipperary. We have three children, two boys and this beautiful girl sitting next to me. Both boys are severely autistic and non-verbal. They need 24-7 care. I am here today to tell the committee the devastating effect having severely autistic children has on a family and on us as individuals. I will cut to the chase here. Our lives have been destroyed by this. Everything achieved, personal interests, work, friends and charity work all yield to giving care full time to the boys. Both boys receive totally different services in the public and private worlds. The outcome for one, Neil the older boy, is devastating and goes on even as I sit here today. We will obviously get to that.
Neil is ten years old and John is 5. Neil was diagnosed by the HSE when he was aged approximately three and three quarters and John was diagnosed privately at one and three quarters. Neil never received proper services at the right time; John did, albeit mostly privately. Neil does not really make progress; John does.
I would describe our attempts to get services as horrific, humiliating and inhumane. I will very briefly tell the committee about Neil. He was diagnosed with autism in 2016 by the HSE. He is also diagnosed with a mild to moderate intellectual disability. By 2020, as it was clear that he was not developing or progressing, he was seen by the HSE’s child psychiatrist who stated emphatically that Neil’s intellectual disability was severe and that he should be reassessed as a priority to ascertain his present intellectual disability before psychiatry could be considered. That recommendation, which went to three HSE managers, was never actioned. In June 2022, we received a letter from the HSE apologising, but with no definite reason for not actioning the referral. We entered negotiations with the local disability services manager, who stated she would attempt to outsource an assessment. I subsequently made various media appearances and was highly critical of the HSE and what happened to our son.
We were then told that Neil would not be reassessed indefinitely. I sent four emails asking for this to be put in writing. All have been ignored. As I sit here today, our family is, effectively, being ignored by the health system as if we do not exist.
How is Neil now? He hits his head and bites his hands every day. Due to total incompetence, we have lost almost three years. The lack of intervention has now done irreparable damage to his development. The scandal is that the failure to intervene with Neil continues to this day. He may also be in the wrong special school, which would be another scandal. I made a formal complaint to the HSE director general on 29 August 2022, which was acknowledged. It was sent on to our local area for investigation. The "Your Service, Your Say" policy states this complaint should be investigated within 30 working days. It clearly has not been. I received a letter of apology on 4 November 2022, which stated that my complaint was only received locally on 2 November 2022, due to an administrative error. Our family has now been the victim of several administrative errors. Our son continues to suffer while these errors take place.
Some of the things I am calling for today include immediate financial relief for parents paying privately for assessments and services; the introduction of a health oversight authority, similar to the Policing Authority, and a proper external complaints mechanism; the expansion of the summer provision programme, and I will be calling for it to be made mandatory within special schools; and the enactment of new legislation specifically for inclusion. I will expand on this point later.
I will also be providing a unique insight into schools. For five years, I owned a consultancy that provided a legal training course entitled "Managing Aggression and Violence within Schools". This was delivered for boards of management and staff. I presented this course to more than 400 schools. This point will come up later in respect of what I see happening within schools. Today, I will attempt to plead for help, not just for our family but also for the thousands of families who simply do not have a voice. I now yield to this incredible lady who will tell the committee about her life and her journey.
Ms Cara Darmody:
I thank the Chairperson, Deputies and Senators for inviting me here today. I am 12 years old and I am here to tell the committee what it is like to live in a family that has severely autistic children in it. I am also here to tell the committee that I am very angry about the way children with disabilities in general are being treated. It is a crisis and a national disgrace. My brothers Neil and John have been treated disgracefully and I am here to stand up for them. I am also here to stand up for the almost 18,000 children who have been left to rot on waiting lists. I will also tell the committee what I have done to date to raise awareness of this crisis, and what I have done to raise money for others. Last year, when I was 11 years old and in fifth class in Ardfinnan national school in County Tipperary, I studied over 400 extra hours so I could sit the junior cycle mathematics examination in June. I raised €40,000 for my local school and Scoil Chormaic special school. Our family did not benefit by a single penny. Today, many other children are benefiting from my fundraiser. It is disgraceful, however, that those schools are relying on a 12-year-old to fund their services.
On 28 July last, I met the Taoiseach in his office for 80 minutes. He was one of the nicest people I have ever met, but I told him that this situation must now be treated like a crisis, like the house is on fire. I told him he was the parent and the HSE was the child, and that he was basically guilty of not parenting the child. I also told him that children suffer permanent damage when they do not get therapy services. Since then, I do not see any change. I want to be very clear: nobody is treating this situation like the house is on fire. Everybody I meet is always so nice, but it always ends the same: they are all talk and no action. I am sick of adults who just talk. Why can you all not do something about this and stop the damage being done to children with disabilities?
So, this is my plan of action. Next June, I am going to become the first person of my age in our country to attempt to sit a leaving certificate exam in mathematics. My fundraiser will again be for the same two schools, but will now include the incredible national organisations AsIAm and Family Carers Ireland. I have already clocked up 100 extra study hours, which is around 17 extra school days so far. I am doing it not because it is easy, but because it is hard. I am calling it "Cara’s Mount Everest Maths Challenge", simply because people tell me it is impossible to do. My message is very simple: “End Disability Discrimination”.
Living with severely autistic brothers is really hard. Neil will hit and bite himself daily. He cries an awful lot. Mam and Dad do everything they can to keep him happy, but the lack of services has ruined his life. I should not have to witness violence each day. It is surely not wrong of me to ask politicians and the HSE just to do their jobs. If I can sit a leaving certificate subject at 12 years of age for free, why can everyone else not do the jobs they are paid to do?
Finally, I am here today to try to inspire the committee to show bravery and do something that will finally bring help to those vulnerable children and families who cannot defend themselves. Please treat this like a crisis. When this meeting ends, the members will all probably say to me something like, “Hope you have a nice week”. I will not. When I go home, I will have to witness Neil’s violence. Unless the committee does something about this crisis, many other families will suffer the same fate as us. I thank everyone for listening.
Micheál Carrigy (Fine Gael)
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I thank Mark and Cara. We will now take questions from the members. We will try to keep the slots to four minutes to ensure we get everyone's questions in. I call Deputy Tully.
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I thank everyone for coming. I especially welcome Cara. She spoke excellently and is making history today as the youngest person ever to present in front of a committee. Unfortunately, we have had other parent groups in here and they have spoken to us as well about this subject. We have also met parents in our constituencies and in different forums, and they are telling us the same things as the witnesses have just outlined, for example with regard to the waiting times for interventions and the regression being witnessed in children, in many cases, instead of progression. I have had parents crying because one child might have been lucky enough to get services and to have progressed well into secondary school, while nothing may have been provided for a younger child. Those parents are worried because they can see that child is not learning and not coping with life in many different scenarios. I hear from families constantly where their child has been expelled from school, and it is usually from a special school setting, which is disgraceful.
This comes down to the lack of resources across the board. We have had representatives of the HSE before this committee. We have asked them questions. I am also a member of the Joint Committee on Disability Matters. The questions have been asked there as well. There are simple things the HSE could be doing but it is not doing them. This issue is not, as was said, being treated as a crisis and with the urgency required. This is a crisis. Children are going to be affected in life. They will not be the best version of themselves that they should be. This is what we need to see.
Summer provision was also mentioned. This is a subject this committee has talked about several times. We have drafted a motion mandating that every special school setting should be providing summer provision. It is the children who most need the provision who are now losing out because this service was broadened out and schools seem to be picking and choosing who they can take into the programme. This is not fair, and we want to see this issue addressed, and addressed immediately. The planning for this must start now and not in May or June when the amount of money to be allocated is announced.
Even if we were to be very cold and look at this context based on cost saving, if children and young people were provided with the services they need at an early age, they would not need as many services and supports as they age. Aged parents were also referred to. I have met many of them and they spend their lives worrying what is going to happen to their children after their days have passed. This is because the provision of residential places is not there, which would make choices possible. When I refer to residential places, I am talking about places in the community and not about the institutionalised settings we used for years. I am talking about having proper, community-based living where supports are in place.
The witnesses are the people at the coalface and they are the people who need to tell us exactly what we can be doing. As a committee, we are going to draw up a report. We have made note of all these issues. We have heard about all of them. We will push for them to be addressed. We have pushed the HSE on the things it should and could be doing. There just does not seem to be the will. I do not know if this is a matter of funding, and if there is not the will to put the funding in place where it is needed and to put in place the properly trained staff where they are needed. There is not enough encouragement for people to go and work in disability services. It is a great sector to work in, but it is getting a bad name now because there are not enough staff in the children's disability network teams, CDNTs. The staff who are there are under severe pressure. They are not able to do their jobs because there are not enough of them to do what they are supposed to do and to see the children. Children are being told they will be seen in three or four years, and this is just not on.
I have, therefore, heard everything that was said before, and I assure the witnesses we are taking it on board.
We will push as much as we can, but what more do the witnesses believe the committee can do? I would welcome their view.
Ms Deirdre Archbold:
The provision of a child psychiatrist is key. I spent five years trying to get melatonin for my child. I spent five years sitting on the landing for five to six hours every night trying to get him to sleep. We were referred to a child psychiatrist. Unfortunately, she was overwhelmed and, prior to me getting an appointment, we were told that she was not taking any child with sleep issues. It was only in 2016 when my child was diagnosed with epilepsy that I managed to get a prescription for melatonin from his neurologist. As I mentioned, every second nurse and doctor in Crumlin hospital asked me whether I had heard of melatonin, given that he was not sleeping and a lack of sleep could bring on epileptic seizures.
We need a child psychiatrist. We have children in our group with mental health issues. Unfortunately, our psychologist is overwhelmed and is not trained to deal with the mental health issues that our children are facing. As far as I am aware, disability teams in the whole of Kildare do not have a child psychiatrist. That might have changed, although I do not believe it has from listening to our parents.
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I have heard from others that there are child and adolescent mental health services, CAMHS, there but that they will not take-----
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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That is what I am told. When I ask CAMHS about this, its excuse is that CDNTs are not working with it on providing information. I do not know. It is like these children are falling between two stools. The same applies with mental health.
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Yes.
Ms Deirdre Archbold:
CAMHS will not deal with them. The parent of the child who is looking for a residential place - I could name her, as she would have no problem with that, but I will not - has not slept in her own bed in two and a half years because her daughter is attacking her younger son and she has to sleep in the same room as the child. As loud as the child will be, she can sneak into his room at night. The parent is screaming for residential places or even respite, but she is getting nothing.
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Mr. Darmody stated that Neil was diagnosed in 2016 and that a reassessment was being discussed in 2020. Did he receive any service or support in that four-year period?
Mr. Mark Darmody:
Nothing of any substance. Our family has been left to rot. I follow this committee and commend it on everything it is doing, but the main issue for me is oversight of the HSE. Where is the oversight? Let us compare it to the Garda. The Garda Síochána Ombudsman Committee, GSOC, has proper teeth. There is also the Policing Authority oversight body. There is nothing in respect of health. When we met him, even the Taoiseach admitted that the HSE was only accountable to its own board. How is that right in 2022?
I was a garda for 15 years and the Garda force is better today because of oversight. If there are issues in the Garda, there are mechanisms to go about handling complaints. Just look at our ongoing complaint, though. It has been lost due to an administrative error. This is what is happening. I am relaying what most parents' experiences are. This is wrong. Even when someone's child is suffering irreparably, parents are treated like an enemy of the State, as I told the Minister of State, Deputy Rabbitte, an hour ago in her office. That is how you feel as a parent, namely, that you have done something wrong. It is like you are the person who has caused this, so you will be the one to suffer more. Why does our son have to suffer continuously?
If everything the committee recommends goes to the HSE for implementation the way the HSE is now, how can anyone say it will be a success? The way the HSE is set up in terms of child disability services is not fit for purpose. There needs to be proper oversight. Every job has oversight except for one, that being, health. Why is that the case?
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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My niece is an occupational therapist who worked in England in the NHS for a number of years. She is back in Ireland now. She is not working directly for the HSE, but for another organisation. She says that one of the main issues is the lack of accountability within the HSE, which is what Mr. Darmody is saying. There is no accountability. There is no head of progressing disability services who can ensure that they are properly resourced, planned and delivered. When I raised this point with the HSE, it told me that it was looking at that now. There is a committee that people are feeding into, but they are probably heads of several other areas within disabilities. It is not-----
Mr. Mark Darmody:
I do not mean to be critical in any way of the political system, but the Minister for Health was asked in a recent parliamentary question whether he would set up an external complaints body for the HSE. That question was sent to the HSE for direct response. Back in the day of the Garda scandals of 15 years ago, that would have been like asking the Minister for Justice, Equality and Law Reform to set up an independent Garda mechanism only for the Minister to send it to the Garda for response. It is ludicrous. This is not a personal criticism.
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I know.
Mr. Mark Darmody:
Politically, we do not hold the HSE to account. As Cara said, the culture - even politically - has to change. The HSE is in control of all of the issues we have been discussing. Regarding immediate financial relief, for example, the State accepts that it is the State's responsibility for our son to be reassessed. No one is saying that it is not the State's responsibility, but because the HSE has decided that it is going to let our family rot, the reassessment is not paid for. If I find someone to do it, why can that not be reimbursed? Why can the State not pay for that when it accepts that a reassessment is its responsibility but it does not have the competence to do it? Why is paying for that my responsibility? In our case, we are talking about thousands of euro to get a psychiatrist down from Dublin, given that Neil cannot travel more than approximately 20 miles. That is his limit. It costs €8,000 or €9,000 to get the proper care. If the HSE rings me up tomorrow and says that it will now give me a reassessment, it will be paid for. If it does not decide that, though, and I find someone instead, it will not be paid for despite the fact that everyone accepts it is the State's responsibility. Someone is going to have to explain that to me because it does not make any sense.
I urge the committee to consider the proposal on immediate financial relief and to find a system. Actually, the system already exists. If the HSE rings me and says that it will get Neil assessed urgently because there is a court case pending, then the assessment will be mysteriously paid for. There is obviously a mechanism, but I have an issue with the HSE being in charge of Joe getting it but John not getting it. One cannot say that there is a complaints mechanism. There is none. We are going through it right now and it is a disgrace. We are going to have to go through it for the next couple of months.
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I have heard the same from many parents about the services in question.
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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No, I understand.
Mr. Mark Darmody:
Whatever the recommendation, the same people will be in charge. It is like back in the day when someone asked the Garda to investigate the Garda. It was just the way it was. Without being critical, we need a new system. We also need oversight. As to what this committee will recommend, who will implement it? If it goes into the hands of the same entity, we will be back here in a year or two or ten.
I ask that the committee consider these two significant issues. Speaking as a family member, finding someone would give us a fighting chance. It is farcical. The Minister of State, Deputy Rabbitte, informed us that the HSE had written to her to say that it was attempting to source someone, but my wife has just found someone. It is beyond frustrating, but we will move on to another point, as they say.
Micheál Carrigy (Fine Gael)
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I thank Mr. Darmody.
Mark Wall (Labour)
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I thank Ms Archbold, Ms Murphy, Mr. Darmody and Cara for attending. It is vital that we hear these stories and that people appear before us. In fairness, Cara's was one of the most powerful testimonies that I have ever heard.
If she were not 12 years of age, or if we did not know she was, we would never have said she was that age. Her testimony was powerful. That is not to plámás her in any way, but it was important she came in and made her statement on behalf of Neil and John. As Deputy Tully said, she has made history today. Well done to her on that.
I wish to put a couple of points regarding the psychiatrists who operate in the Kildare area. I will start with the special needs group in Athy. I thank it for all the work it has done over the years. When it started out it had a small number of people, but that number is growing and growing. I have attended a number of its events over the years and will continue to do so. The one thing I get from its events is the way in which it treats the siblings, as family, and the way family are affected. I would like to hear a comment from the witnesses from the group as to how that inclusiveness is very important, such that the child who has autism or the autistic person is not isolated, and how important it is that we include all family members, like Cara has given her testimony today on behalf of her brothers. It is important that that message goes out from the committee.
When we set up the committee, we spoke about a nine-month remit. It is a short space of time we have to put everything together. What we want is what the witnesses have done for us today, that is, to hear the stories. As Deputy Tully said, we had representatives from the HSE before us. In fairness to them, they answered our questions, but does anyone believe what they said? I do not because in my clinics, and for the people I deal with, this is just continuous. They are not getting the services. That is the bottom line and it is the bottom line the witnesses have pointed to today. Something needs to change.
Mr. Darmody referred to oversight. This is a political committee, but we have a Minister for Health who has to take responsibility for this as well. That is where this needs to go. If there is to be oversight of the HSE, it has to start there and with the oversight that is there, whatever the Government of the day or the committee's recommendations.
We have spoken about summer provision and the motion we have brought forward. We are depending on that to be implemented. We will use every political force we have to ensure that happens. The Government of the day, however, has to make sure that whatever recommendations are there and whatever services are needed are followed up on. That is essential.
Cara spoke of the house being on fire. That is what is happening out there. Every day - and I am sure this is the same for my colleagues - I get calls from people who cannot get school places, services or melatonin. Ms Archbold, Ms Murphy and Mr. Darmody might wish to speak about how that is affecting people. It is huge. Respite care is a major issue for families. It gives them a break. Mr. Darmody spoke about how his family's lives have been turned upside down. He used words such as "horrific" and "humiliating". That is unbelievable for us to hear, but that is what we hear day in, day out. The fire in the house has to be put out in some way.
I am a member of the social protection committee. We have talked about the means test for carers. That has to be got rid of. So many people are losing out on carer's allowance. We want to see money. One of the problems I come across from speaking to the people I deal with is that they are paying privately for services and they cannot afford to do so. They are going to community welfare officers. I have raised this before at meetings of the committee and at various other committees. The money is just not there. The families just cannot afford those services. It has come to the point at which this is all about money.
I have just a couple of questions. What is the effect of this on siblings, and how does the witnesses' group treat that? How has the cost of this affected Mr. Darmody's family? I ask so we get some idea of the money we are talking about.
Micheál Carrigy (Fine Gael)
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We might take Mr. Darmody and Cara first.
Mr. Mark Darmody:
Senator Wall mentioned carers. Cara would be classed as a young carer. I never thought I was a carer until I went to a carers' forum once.
As for the cost, to answer the Senator's question directly, Neil may want to go on what we call a special patrol sometimes twice in an evening. It takes one hour a time. That is what we do in the evening. That is how a Saturday is taken up. We are talking a 500 km to 600 km drive a week. That alone costs probably anything up to €100. Take summer time and a simple thing. Neil turns on every light in the house. We turn off the lights. Our ESB bill is through the roof. We do not complain about those costs, but they are additional.
Mr. Mark Darmody:
Then there is the point about carers. The Senator is right to bring up the means test, because it is crippling. It feels on the ground like the Government wants to have an argument with you over pennies when there is no realisation that your life is being devastated or that you are providing 24-7 care. My wife has a master's degree. She was taken from her career because of this. It is really tough. I do not think it comes across that our lives have basically been destroyed. Then we have to argue over the means and so on. Say I earn X amount. Once I go over that, it basically comes off the carer's allowance. Family Carers Ireland bring that up all the time and it is right on the point about getting into an argument. Even the fact that carers are seen as welfare is an issue. My wife takes offence to being considered a welfare recipient. She worked and studied so hard her whole life. Carers, to me, are not welfare. We have a 24-7 job. I look back to when we might have worked only eight hours a day. God be with the days. It is 24-7 now, 168 hours a week. I have to sleep with Neil at night-time. It actually is 24-7. As Cara said, when people say to us, "Have a nice weekend", we do not have a nice weekend. I am just laying it out there. It is really bad on the ground.
Ms Deirdre Archbold:
Carers work 24 hours a day. I had a good job. I used to teach swimming to people with special needs and I loved it, but who can you get to mind an autistic child? I would love to work but, unfortunately, if my son is going to have a seizure, it is in the morning. I cannot imagine any employer keeping me on if I ring up within half an hour's notice saying, "Sorry, I cannot come in today", because my son sleeps for five to six hours after a seizure. He needs that sleep. His body is exhausted. Senator Wall asked about siblings. His sister is amazing. She had her own mental health issues after Covid and so on, but we have included siblings in our club from the very beginning because we have felt that they have been ignored. If there is a special group, it is a special group and only the special children can come. We have brought siblings in. They come to realise they are not alone. Ms Murphy does fun and games. The siblings interact, play with the kids and help out. Ger's older son, who is on the spectrum, is one of our volunteers. He is fabulous with our children. We need to include our siblings. They need more support. It is just-----
Ms Deirdre Archbold:
It is not. My daughter has stood up big time. I brought it up with her home tutor because if there are children on the milder end of the spectrum in school, they will not want to tell somebody they have autism if it is treated as a joke. It is good she is there. She will stand up for somebody else. Like Cara, the siblings will stand up for their brothers and sisters. They probably will not say anything for themselves or ask for anything for themselves, but they love the club. My daughter now volunteers in the club. She is brilliant. She has been missing out because she has camogie the same night, but they come to all the events and we include them all in our events. We run a silent Santy. We had a Hallowe'en party. We do trips down the river, which they find very calming. There is a lovely boat that goes down the river in Athy. However, we have to include the siblings because we were involved in the club and we were sitting outside with the siblings and they were losing out. They were not playing with-----
Ms Geraldine Murphy:
They could see their brothers and sisters in there having fun, and there they were sitting outside the door looking in. That is why, when we started the group up, we said we would not exclude siblings. The parents love it because they are not trying to find someone else to mind the kids while they come to the group.
Ms Deirdre Archbold:
An unexpected, lovely surprise from the club is that the parents support one another because we are all there with all our children, special needs and mainstream children. We are there together. For those starting on the journey we say, "Here you are. This is what you do." My child is 18. Ger's children are 22 and 18. These issues have been going on since my child was diagnosed when he was three and a half. I was counting when Mr. Darmody was speaking. I reckon he has had about eight different occupational therapists, OTs. His speech therapist is the same. At our last family meeting he had a new social worker and a new OT.
He never needed physiotherapists. I did not even know they had changed. They were gone. They had left.
Ms Geraldine Murphy:
I would like to bring up something about carers. When a child has autism, they are not cured of it at age 18. It is unfair that, since my young lad turned 18, every year just before Christmas my carer's allowance is reviewed. I am a single mom so I rely on it. I should not have to go to the doctor to get a letter stating that my son is not cured of autism. He is not cured of autism and will always be autistic. I am trying to get him to have an independent life. There are no adult services for him because he is mild and moderate. His younger brother is the same. He is coming up through the system and will turn 18 in January. We will have the same fight again. I am told by the team to contact my mental health service. Why come from a disability service and put kids in a mental health service? It makes no sense.
Pat Buckley (Cork East, Sinn Fein)
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We had a good session in the first part of this committee. Listening to the witnesses and looking at their faces, I see the anger, frustration and hurt. We are not here to patronise. What is important is for the witnesses to tell their stories in the committee so they get into the media and people know what is going on. I was lucky enough in the previous term, back in 2016, to be mental health spokesperson for Sinn Féin and to sit on the disability committee. The witnesses are right. I cannot believe they are telling me again today that the responsibility is not there in any professional organisation and that somebody with a form of autism can be told they are going to mental health services when it is known for a fact those services will not touch any adult or child. I am well aware of that. We had to send people to England to get services at one point.
When I read Mr. Darmody and Cara's opening statement, I was angry, though maybe not as angry as they are because they are living this. They are spot-on that there has never been oversight, accountability or responsibility in the HSE. I have argued it for years. Things have changed a little. When I was mental health spokesperson and tabled in parliamentary questions to the HSE, there was not even a person's name at the bottom of a letter. You were getting a response from the Department but nobody was held accountable or responsible for that response and you could not chase it up. That is how things get lost in the paperwork.
The means test is bonkers, especially for somebody who passes the age of 18. It is an insult to families, who are stretched as it is. If they can get a GP, they have to pay him or her €60 or €70. I will get in trouble if I use my choice words in committee on that. It is indescribable.
There is something regarding means test for carers in certain families the Department does not tell you. We only learned this through a Topical Issue debate a number of weeks ago. There is a separate office in the HSE that can means test a family's situation one to one, where a commonsense approach comes in. They do not state that on the appeals letter, but it is there if you need it. All families and NGOs should be made aware of that.
It must be hard for Cara to come in here but she should be so proud of what she is doing. Only for my two brothers, I would not be sitting here . That was a different situation, however. On committees like this, we all have a personal interest. That makes us more driven. We are not very political in this. It is a personal committee. We will take everything on board. We have a motion ready to go. Our report will not sit on a shelf. The more information we get from the witnesses, as the professionals, the better. It is not the royal college of X, Y or Z but the people who have the lived experiences. They are the professionals. I ask witnesses to let us know if there is anything we can do, even outside the committee. I hear the anger and frustration. In the last one, it was great to hear the good news stories and now we are back to the reality of people being persecuted and locked in their own homes.
When I sat on the disability committee some years ago, we met families. Things have not changed. We met families who had to lock their children into the Alsatian cage in the kitchen for their own safety and for the family's safety. That has to be recognised. The terms "disability", "autism" and "mental health" are frowned upon. There is a stigma involved. You are a pain in the ass to society. They tell you to stop giving out because they are not listening. They do not see the human impact unless it affects them directly.
Pat Buckley (Cork East, Sinn Fein)
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Exactly. That is why I wanted to put that point on the record. Do not ever be afraid of putting anything on the record here.
Ms Deirdre Archbold:
There is another issue I forgot to highlight, namely, the GP card we were told we were entitled to as carers. That is fair enough but they send you out the whole form where you have to put your means and everything. The majority of carers are afraid to apply for the GP card because they know they will be means tested and will probably lose the piddling amount of carer's allowance they will get.
Pat Buckley (Cork East, Sinn Fein)
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It is ridiculous.
Ms Deirdre Archbold:
When the medical card was done, a new medical card form was given for children with the domiciliary allowance. It was a two-page form. You filled it in, your doctor ticked it and that was sent in. Why can that not be done for carer's allowance? Parents do not look after each other. The majority of us do not have the €50 or €60 needed to see a doctor if we are not well. We need to look after ourselves in order that we can look after our children. I guarantee that there are many parents out there who are carers and who will not apply for the GP card because they will have to go through a means test again. They are afraid they will lose the little financial support they get.
I have to have the heat on when my child is at home because he cannot get sick. If he gets sick, he gets a temperature and has a seizure. During our previous meeting up there, they were discussing sudden death in children with epilepsy. The first thing you are told when your child is diagnosed with epilepsy is there is a 15% chance they will not wake up in the morning. How can I afford to put the heat on with the prices? He is not entitled to fuel allowance because by husband has a job. He is getting the disability allowance and that is written on the disability application form. If there is anyone who works in the household, you are not entitled to the fuel allowance.
Pat Buckley (Cork East, Sinn Fein)
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It is not often we are speechless.
Pat Buckley (Cork East, Sinn Fein)
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I am glad you are saying it because this needs to go into the public domain. We all know families. I have worked with volunteers and my kids volunteered for schools during the summer, volunteering with kids and bringing them up to the zoo in Dublin and stuff. It is important to see how people interact and learn about what other families are going through. When it is a disability or mental health, you are not even a second-class or third-class citizen in the eyes of the State, which is disgraceful and disrespectful. When you ask for help, these things should be based on your needs, not on what you have in your pocket or means.
I am delighted the witnesses have told their stories and spoken honestly about them. I hope somebody outside the committee will pick it up and drive it. We can only do so much from inside but this committee has teeth and will not let this go.
Mr. Mark Darmody:
On carers, it all comes down to not just the means test. Family Carers Ireland is backing Cara at the moment and is looking to sit down with the Government to trash these issues out.
As I said, it is the way the carer's allowance is seen and the attitude towards it. It is seen as another welfare payment. I understand the basic thinking. However, when carer's allowance started, it was a whole different Ireland. It is now 2022 and we are talking about people such as my wife, who will be caring for someone for the rest of her life on this earth. That is the reality. There was a very young child who was diagnosed at one and three quarters and she is put into the caring career. That is essentially what it is. It needs to be treated almost like a career. It needs to be treated fairly. At the same time, massive tolerance must be given, as I said at the start, because your life has been destroyed.
I refer to the ordinary taxpayer. I remember when I was just working away. One has those arguments with the taxman over the little things. However, as the ladies said, one has to turn on the heat perhaps in the middle of summer or these other things that would never happen within the normal households and no one wants to discuss those things. There is no form where people fill out the extra money they are paying. That is not taken into account. I understand the basic revenue tax principle. However, real allowance to be given for the circumstances that a carer is going through. We are not talking about 1,000 or 2,000 people, we are talking probably more than 100,000 people in the State. It is a massive number of people.
Ruairi Ó Murchú (Louth, Sinn Fein)
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As per normal, if I just did not press anything, this would work much easier. I would like to thank Ms Archbold, Ms Murphy, Mr. Darmody and particularly, Ms Darmody, who laid it out absolutely starkly in relation to her family and brothers, Neil and John. I had to ask a question in the transport committee that came up at the previous meeting, but after Ms Darmody spoke, I was absolutely frightened to walk out in case she decided I was not giving enough attention.
In fairness, what all the guests have said is absolutely stark. I get what Ms Darmody said that nobody wants nice words on their own because they are good for nothing. We all accept that. If we talk about adult services, we are all aware they are non-existent. That is where we are on that, including even people with autism and presenting in a milder way. I am not entirely sure of everyone’s notion of "mild". I would often talk about our Turlough having moments. Those moments are something to be witnessed, but I probably undersell it. That is not to put Turlough necessarily in the same bracket as some of the children who are being spoken of here.
When we are talking about the means test and dealing with the realities, we all get it and have all said at times that this State could not afford or deal with the service that our guests provide. What if all of the sudden they decided to shut up shop - not that they would - and every child was left at an accident and emergency department in the morning? It is phenomenal. On that basis, and Mr. Darmody said it, one can see the reality of how some of this happened. The fact is looking at what a carer does as a welfare payment, for example, obviously does not make sense in the sense that this is someone who is doing the State a serious service. That has to be recognised and looked at holistically. There is no point in just looking at individual payments or added payments for fuel or anything. It is that general notion. He got that idea across as well of people in absolute fear of filling out a form that they will lose what they got. Again, no level of acceptance of the service that they are providing, not only to their children, but to wider society is enough. We just need to lay that out absolutely starkly.
In fairness, Mr. Darmody spoke about the whole idea of oversight of the HSE, which is absolutely necessary. However, the problem is we are starting in a place with the HSE where there has been a lack of planning and we do not have the capacity to offer the services that should be offered. We all know all the positions that are not there. I am not sure that the planning is in place to try to improve that as much as needs to be done. That is one thing.
In fairness, I will just go back to the fact that it has absolutely come back to the guests to put stuff in writing in relation to answers that they got across the phone and whatever. We can all accept that the Darmody family has been absolutely failed and it is utterly disgraceful. I am not always into confrontational politics because sometimes it can be easy, but it can be pointless. However, we are dealing with many a failure here. My biggest difficulty is I am not sure that we have set in train to deal with that. If we do not have the capacity to offer the service, we at least need to be able to be straight with people on what can be offered and dealt with. We then have the conversation of how we cut cloth to measure and how we then deliver capacity, which is the thing that is not happening across the board.
On some level, I will just throw it open for commentary from the guests. We are all in agreement that the service is not there and the capacity is not in the service. Along with that, our guests cannot get a straight answer from it. I think we all agree that we have to look at the means by which we support those who are involved in family care who we could not in any way survive without.
Mr. Mark Darmody:
I will come in. Without being overly critical, the HSE has shown that it is not capable of doing this even in our area. The Minister of State, Deputy Rabbitte, said we are probably the worst area in the country with figures. It is getting worse – not better. This is like watching a sinking ship go down and down. However, children are suffering permanently because of this. At some stage, people have to say, “Stop”. We need to find someone else then to do it.
I refer to my idea of finding a financial way. Parents will be able to find someone. It will not be the solution – I will concede that absolutely. However, it gives parents what I call a fighting chance. For example, I could find or get someone to come down to my house and help me tomorrow morning. I do not have that fighting chance right now. If this committee came to the conclusion that was a good idea to somehow source a way to do that, it would be helpful. We are at our best when we, as Cara said, see things like a crisis. We see that we have to come up with an answer tonight, not tomorrow.
Ruairi Ó Murchú (Louth, Sinn Fein)
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The house is burning, so we need a short- to medium-term solution before we get everything else correct and have the proper service in place, which is providing-----
Mr. Mark Darmody:
In theory, for example, the Deputy could tell me to keep my receipts and in six months the Government will have something set up. It cannot solve the problem tonight, but it could promise me something so I should keep my receipts. The State accepts that we are not responsible for what we are about to do. It accepts that, so we should keep our receipts and it will sort it out later. Even that would be such a welcome development for parents. Many people just do not have the money. Let us just get that straight. It is not a solution here. However, it would give them a fighting chance. Perhaps someone could loan them some money or a family could come together. Right now they have no chance. If I spend €8,000 on psychiatry and all that right now, that is our children’s future-----
Ruairi Ó Murchú (Louth, Sinn Fein)
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One would probably struggle to get those services at the minute because they are probably block booked by the HSE because of the lack of the capacity it has itself.
Mr. Mark Darmody:
There is a toxic atmosphere in the country between parents and the HSE. Imagine if that was just taken out and someone just said, “Just go to this psychiatrist here. There is your provider. We will sort it out later.” It should get rid of the toxic culture that is across this country right now and give parents a chance. That is basically what the Government should do.
Ruairi Ó Murchú (Louth, Sinn Fein)
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The house is burning and we need provide water as soon as possible in any way or means that we can and then we fix the other parts.
Mr. Mark Darmody:
In theory, the Deputy could tell me tonight to keep my receipts. The State knows it is not a solution, but if it said, “You get the care if you can do it. We care about your child and we are sorry but the State cannot do it right now.” We could go and do it if we could and the State would pay for it. That would be just a start. If that could be done, it would be the first step on the ladder.
Ruairi Ó Murchú (Louth, Sinn Fein)
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I get it. We would have to find the means, as they say, to also then facilitate those who could not afford it. However, there are wider issues.
Ruairi Ó Murchú (Louth, Sinn Fein)
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There are issues that the Minister, Deputy Harris, in particular will have to deal with in relation to how we will fix it.
Ruairi Ó Murchú (Louth, Sinn Fein)
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I get that the house is burning at the minute, as Ms Darmody said.
Ruairi Ó Murchú (Louth, Sinn Fein)
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Mr. Darmody said it as well and we all get it – the early interventions are not happening so there are lost opportunities. I think Mr. Darmody used the term “irreparable damage”.
Mr. Mark Darmody:
Somebody should make a statement on this. “Early intervention” should not be allowed to be used as a term in this State because it does not occur unless one pays privately. Stop using the words “early intervention” because it is not occurring unless someone actually comes up with cash and pays that over. The State is not early intervening even in one child, so it should stop using the term. It does not exist in this country.
Micheál Carrigy (Fine Gael)
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I will make a few comments. I thank the group in Athy for the work it does in its community and for the support it gives to families there. It has been spoken about here before and we have met various groups from around the country that are doing so much voluntary work and giving so much support without financial subvention from the State to help them give the support they give. We should look at providing a mechanism for groups to apply for funding, whether it is through the local authority or the Government, to support them to provide their supports and services.
I was reading Ms Darmody's piece again and I was drawn to what she said in her final paragraph, that she is here to try to inspire us. She has done so by coming here and in what she has done. I met Ms Darmody a number of months ago when she was in Leinster House after she decided to take on the task of doing the junior certificate. I am amazed that she decided to do that. I thought doing maths in the leaving certificate was difficult enough but I compliment Ms Darmody on what she is doing at the age of 12. She mentioned our report and it has been said that a diagnosis is a diagnosis for the whole family. We want to hear about the lived experience from families in the committee and that will form the basis of our report. The recommendations on what changes need to be made on the ground that we put forward will be ones from parents, siblings and families.
What does Ms Darmody want the committee to do? We will be making recommendations to Government, the Seanad and the Dáil next March and then it is a duty on us as public representatives to make sure those will be implemented. We will hold the Minister, whoever is in that position, to implementing what recommendations we make. What does Ms Darmody want us to do?
Ms Cara Darmody:
There are three things I mainly want the committee to do. First, parents should not have to pay privately for services that they are already entitled to. They should not have to pay for private services. As my Dad said, you cannot use the term "early intervention" anymore because you have to pay for it privately, which is a big problem. Second, the HSE must be made accountable for the lack of action. The HSE is not accountable and that must change urgently. Third, the main thing, which links to everything, is a change of attitude. People need to treat this like a house that is on fire. Like I said in my speech, it needs to be treated like an emergency and like the house is on fire and that is not being done. People need to change the way they think of things. Those are the three things I want to change.
Micheál Carrigy (Fine Gael)
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That is something all of us will take on board. Before we finish I invite Mr. Darmody, Ms Archbold and Ms Murphy to say something for 30 seconds if they wish.
Mr. Mark Darmody:
I will make a few quick points about the issues in schools. First is summer provision. As someone who has been in many special schools there is an issue with paying special needs assistants, SNAs. The SNAs will always bring up the finance issue so that should be borne in mind. Paying them €17 per hour is an issue.
Second is inclusion and the law on same. Section 2 of the Education for Persons with Special Educational Needs Act 2004 and section 7 of the Equal Status Act 2000 have provisions that basically say that if you have special needs you can more or less be removed from education if you are disrupting the education of other children. I am not sure how that is inclusive. If that law remains I do not see how we can move forward with including children.
Third, the use of force is a major issue within schools and I have not heard that brought up here yet. There are no national guidelines for how children can be handled in this State in any capacity. It is a serious issue because the staff will have to put their hands on our two sons and there are no guidelines whatsoever surrounding that. If we take out special needs there are junior infants who could bolt for the road or two guys could get in a fight in a school and there are no guidelines. To put special needs into the middle of that is like lighting a fire. In theory we want every national school to be inclusive and that is the goal for every child but unfortunately we have a long way to go. We need to look at the guidelines and there are none right now. Even in special schools they are struggling with this and there is nobody there to help them and to say what needs to be done.
We all know the law changed on reduced hours in school. Unfortunately there is a culture where the children are still being sent home early. That is being done in good faith because the parents do not want a suspension for one hour because of their children. What happens in my world, the legal world, is that the educational welfare officer is not notified and no help comes to the child. It is like there is a habit of sending home the child but we do not get the educational welfare officer to come in then after the 20 days to say that there is a serious problem. Those are major legal issues on the ground that I would like to see tackled. Maybe I can make a submission on that in writing.
Micheál Carrigy (Fine Gael)
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If Mr. Darmody wishes to make a submission on that it will be circulated to all the members.
Ms Geraldine Murphy:
Schools are being asked to put ASD units on when they are building new schools and classrooms but secondary schools are not getting support from the HSE. Kids with special needs will get a bit of help in primary school but no one from the HSE will go near the secondary schools. The schools need the backup, especially for a child who has gone into the ASD unit of a mainstream school. The school will need help and supports, especially if the child has challenging issues, which a lot of kids on the spectrum do. If you ask any principal of a school they will tell you the same; they are getting no support from the HSE.
Ms Deirdre Archbold:
I mention the lack of special schools and my child is in a special school, for example. He was in a unit in a mainstream primary school and it was flagged to us that he needed to move. It took me three years to get him into a special school. For the majority of the children in ASD units, when they hit primary or secondary school level they are not able for an ASD unit but all that has been made available is ASD units. We need special schools for our special children. Unless their needs are mild there is nothing out there for them. There are two special schools in Kildare and then there is one special school for children with mild needs but the rest are all units. You do not have a hope in those circumstances. Conor's school is St. Anne's Special School on the Curragh and it has children coming from Wicklow.
Micheál Carrigy (Fine Gael)
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There are 136 special schools in the country.
Ms Geraldine Murphy:
They were not getting the early intervention and therefore a lot of the kids are regressing now. Parents are doing their best to bring the kids on but they are not getting the backup from the HSE, the psychologists and the OTs. I have asked for an occupational therapy assessment for my young lad and he only has a few more months left with the HSE. I will not get that occupational therapy assessment.
Micheál Carrigy (Fine Gael)
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I thank Ms Archbold, Ms Murphy, Mr. Darmody and Ms Darmody. The summer provision was mentioned and we have submitted an early resolution from the committee on same. We will be adopting a report, which will be laid before the Dáil and the Seanad, on the summer programme for 2023 asking that at a minimum every special school has a school-based summer programme. The figures from the summer gone by are that 14% of the pupils in special schools got a school-based summer programme. They are the kids with the highest needs and that is not acceptable.
Micheál Carrigy (Fine Gael)
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We are pushing strongly on that for summer of next year and we have made other recommendations within that on extra professionals who would be eligible to work on it.
Ms Geraldine Murphy:
They could even bring it into the secondary schools. The kids go the whole way through primary school with July provision and then come secondary school there is nothing; they are finished at the end of May.
There is nothing available until students return in August and they need routine but do not have it.
Micheál Carrigy (Fine Gael)
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We have taken a particular interest. We have produced an area report, which will be adopted and publicised in mid-November and laid before both the Dáil and the Seanad to debate our proposals and highlight the serious concerns that we have. A lot of responsibility will be put on principals in a lot of schools. A lot of people will make decisions now to the effect that they are not going to do this next year but I suggest that people make plans and then it is up to us, as politicians, to make sure that there are supports available as regards staffing etc. to work in the system.
I must conclude as another committee will commence its meeting here shortly and I have been warned for running over time on a regular basis. That concludes our business. The committee stands adjourned until a private meeting on Thursday, 17 November at 12 noon.