Michael Moynihan (Cork North West, Fianna Fail)
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Apologies have been received from Senators Clonan and O’Loughlin. The purpose of today’s meeting is the consideration of family-centred practice and family training interventions.

On behalf of the Joint Committee on Disability Matters, I would like to welcome Mr. Matt Buttery, chief executive, Triple P; Ms Cherie Tyner, chief executive, and Ms Ciara Ní Raghallaigh, Parents Plus; and Ms Niamh Kerrigan, parent. Mr. Wayne McSweeney is joining us online. They are all very welcome.

A wide range of issues will be discussed this morning. We are, of course, like nearly every morning, under time constraints. We have a lot of business to go through and I ask everyone to be mindful of that.

Witnesses are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against any person or entity in such a way as to make him or her identifiable, or otherwise engage in speech that could be regarded as damaging to the good name of another person or entity. Therefore, if their statements are potentially defamatory, they will be directed to discontinue their remarks. It is imperative that they comply with any such directions. Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against any persons to make him or her identifiable. I remind members that anyone who is participating remotely must do so from within the confines of the Leinster House complex.

Without further ado, I invite Ms Tyner to make her opening remarks.

Ms Cherie Tyner:

I thank the committee for the invitation to speak today on behalf of our charity and the services and families that we set up to improve outcomes for. I am joined by my colleague, Ms Ciara Ní Raghallaigh, disability speech and language therapist and special needs programme co-ordinator, as well as parents Ms Niamh Kerrigan and Mr. Wayne McSweeney.

The critical value of early access to evidence-based, tailored parenting interventions for families raising a child with a disability through their local children's disability network teams, CDNTs, cannot be underestimated. It is a key component of family-centred practice and essential if we are to ensure delivery of individual family service plans that recognise the importance of focusing on the whole family and not just the child requiring support. Research emphasises that empowering parents with the tailored parenting tools that they define as needed to support their family is a critical determinant of a child's future outcomes, as well as that of their siblings, parents and communities. However, early or any access to proven parenting interventions can be low in some areas, where parents and children can end up in crisis, receiving reactive rather than preventative parenting supports, failing on our commitment to UN Convention on the Rights of Persons with Disabilities, UNCRPD, and the right of families to accessible, tailored information to support their family.

As an Irish charity with more than 25 years’ experience researching and developing evidence-based parenting interventions for services supporting families, our collaborative practice, training and supervision of these teams ensures we are uniquely placed to empower services to deliver parenting interventions tailored to the needs of local communities. We hold parents in high esteem and recognise them as the experts of their families. We work closely with disability teams to build their capacity to improve outcomes for families from the early years right up to adulthood.

Our model of developing tailored parenting interventions in partnership with services and families for services and families means teams are better equipped to work collaboratively with parents to achieve the outcomes they define for their family using our proven programmes, supervision, evaluation and outcome tracking. Our model of reinvesting all profits made from sale of our professional parenting interventions into development of new parenting programmes and in sponsorship of services with limited funding to train in our programmes emphasises our steadfast commitment to working together with services to improve outcomes for families.

This can be seen in our recent work to support disability services. There are more than 22,000 children under 18 living with an intellectual disability in Ireland. For a number of years, disability services were contacting us to develop an evidence-based parenting programme for families raising an adolescent with an intellectual disability, communicating that although they received tailored support during the early years, as the child approaches adolescence, services did not have a proven parenting programme to draw on for this cohort, when challenges and psychological distress are at their highest.

Parents Plus responded to this need by developing the Parents Plus Special Needs Programme, PPSN. PPSN has undergone a randomised controlled trial with the psychology department in Trinity College Dublin, TCD, with impressive results. It was developed in partnership with families and disability services and is designed to be delivered by established disability services to parents in their local communities to empower them to change the outcomes not just of their child with an intellectual disability, but all their family, so they can realise their full potential, belong to, and contribute to an inclusive society, which is a key commitment of CDNTs and UNCRPD.

The urgent need for this programme was brought home by a disability social worker who trained in it and delivers it. She stated:

Our service operate a duty social work [number]. Up until we ran [the programme], parents frequently called the number, pleading for help with their child's challenging behaviour or because they did not know where else to get help ... [W]e had to advise that they contact the guards or present to A & E [with their child]. Fast forward and not one of the parents who attended PPSN has called [the] number ... PPSN is without doubt the solution to the crippling problems that parents of adolescents with an intellectual disability face. Each parent ... talks about it as life changing. All professionals working in disability should be trained in the [programme]. It should be compulsory and offered to every family.

Although we share the successes and the incredible work done to date with disability teams across the country, the issue of inequitable access to proven parenting interventions for parents raising a child with a disability via their local CDNTs is still an issue. Weekly, we are informed of no budgets and services are contacting us, seeking funding from Parents Plus charity to train in and deliver our parenting interventions. We sponsor whom we can, yet our resources are finite. Weekly, parents contact us, highly stressed and seeking signposting to evidence-based parenting interventions being run in their local communities. This is not a criticism of CDNTs; it is just a reality. However, it is a reality that we can work together on to solve and one that Parents Plus charity is committed to helping overcome.

I thank the committee for addressing this important issue. We look forward to answering any questions that members may have.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Ms Tyner for her contribution.

Mr. Matt Buttery:

I thank the Chair for inviting me today. I am the chief executive of Triple P UK and Ireland and I am also an honorary associate professor at the University of Warwick. I hoped to have an amazing parent, Pamela Gannon, with me, and her equally amazing support from the Tusla team at St. Helena's, but unfortunately, circumstances changed last night. Ms Gannon is very sick and was unable to make it. I am sure Deputy Ellis would testify to the excellent work of St. Helena's and of Better Finglas. Perhaps there could be another opportunity for this committee to hear from them and Ms Gannon, in particular, and the amazing testimony that she can bring. I have some written testimony from her and perhaps I could share it later on.

I will not repeat some of the points that Ms Tyner made but rather introduce Triple P. Triple P, Positive Parenting Program, is a multilevel suite of evidence-based interventions that increase in intensity. They are suitable for children from birth to age 16. Each level of our system can be delivered in a range of formats, including one-to-one, small groups, large groups or self-directed by parents online. This system of parenting and family support interventions is designed to prevent behavioural, emotional and developmental problems in children. It aims to help parents develop a safe, nurturing environment, promote positive, caring family relationships and develop effective strategies for promoting children’s development.

The programme has been developed, researched, and licensed by the University of Queensland in Australia. It is ranked by the United Nations as the world’s most extensively researched family skills training programme, backed by more than 40 years of ongoing research. Our programmes are delivered in more than 41 countries including Ireland. Some 14 of the 17 Triple P programmes, which we have submitted to undergo the rigorous assessment process of the Early Intervention Foundation guidebook have received the coveted 3 evidence standard. This guidebook lists early intervention programmes demonstrated to improve outcomes for children, young people and their families. Only programmes with level 3 or higher can be categorised as evidence-based according to their standards. This means the programme has undergone at least one rigorous randomised control trial, RCT, and a judgment of causality can be made. The intervention itself is making the difference. The guidebook, and the standards of evidence, are being used to deliver the What Works Ireland Evidence Hub, which is expected to go live later this year. Triple P has a proven track record of working with State agencies, such as Tusla and the HSE, and voluntary, community, faith and school sectors. We have been present in Ireland since 2009. Our programmes have been rolled out across the country. More recently we were delighted to be chosen as one of two positive parenting programmes, of which both are here before the committee, to be delivered under the Sláintecare Healthy Communities programme. Everything we do as a community is to improve the life-course outcomes of children. Nothing is more important than the kind of parenting they receive. Childhood is a crucial stage of development for all young people, particularly for children with developmental disabilities. Research shows that among parents of children with developmental disabilities addressing critical factors such as parental stress and behavioural problems early in life can improve the parent-child relationship in the long term.

Good parent-child relationships may mediate the relationship between parental stress and social and behavioural development. Negative parent-child relationships may be particularly damaging to children with developmental disabilities. Targeting these factors may not only dramatically improve the outcomes for children, but also later outcomes for adult life. Parents of children with disabilities are often faced with multiple challenges and difficult parenting situations. It is important for us to consider innovative means of addressing these challenges, specifically with cost-effective, evidenced-based and scalable approaches, which can support all parents of children with disabilities. Parenting programmes may have to take into account that there are children with special needs whose parents need support. Stepping Stones Triple P has been designed specifically for parents of children with additional special needs, with the aim of teaching parents how to encourage healthy behaviour and emotions where there is a developmental disability. This system of interventions, of which Stepping Stones has multiple, provides parents with comprehensive support in managing their child’s behaviour across various settings and with various issues. The focus is on understanding the function of problem behaviour and teaching children new skills that can be used to replace misbehaviour and promote positive development. The programme can be delivered in a range of formats with different levels of intensity, whether that be group, one-to-one, or short, low intervention formats such as seminars. All variations of Stepping Stones have been assessed by the Early Intervention Foundation. In addition to efficacy, the Early Intervention Foundation cost ratings indicate that they are low or medium-low cost to deliver and set up.

Evidence-based parenting programmes work. Research shows that positive parenting programmes like Stepping Stones Triple P can benefit families with children with developmental disability in some of the following ways. They reduce child behavioural and emotional problems, improve parental mental health, reduce conflict over parenting and improve family functioning. They reduce the stress and burden on parents in the longer term and reduce dysfunctional parenting practices. I will turn to the lived experiences of the Stepping Stones positive parenting programme. I would have loved if Pamela Gannon were here to share her experience. However, I also have an example from a large case in Australia, where they took a public health approach to positive parenting of children with a disability. I have a summary of the report, which I would be very happy to circulate to the committee. It is very readable as a summary of a randomised control trial that was done over a number of years.

Between 2012 and 2017, Stepping Stones was offered free of charge in three Australian states to families of children aged two to 12 with developmental disabilities. The programme was chosen by the government as part of its Mental Health of Young People with Developmental Disabilities programme because it was cost effective to deliver. It was flexible to suit the needs of families with a broad range of problems and additional needs and it had been shown to work. The programme was delivered in a range of formats and at differing levels of intensity. Over that time period, approximately 38% of the target population participated in the programme. A significant number of parents - thousands of parents - were able to engage in this programme. An evaluation of the Stepping Stones programme found that child behaviour and parenting skills improved when they participated. A significant decrease in negative child behaviour was shown at three months and maintained at 12 month follow up. Parenting skills improved by becoming more positive and less coercive. Parent stress reduced following the programme. However, it should be said that for those with significant financial hardship that stress was reduced less. Poverty has an impact on top of the challenges of raising a child with a developmental disability. Participating families were helped financially as they were able to take less time off work, and organisations and professionals adopted the programme enthusiastically. I thank the committee once again for this opportunity to speak and I look forward to questions.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank the witness. Any documentation he can share with us would be greatly appreciated. The more information we have the more we can do.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I thank the witnesses for their presentations. I presume the two programmes are similar. I talk to parents all of the time. They contact me, often distressed, because their child is hurting himself or herself, or lashing out at other members of the family. Maybe they are tearing or eating their clothes. They are crying out for help, and they do not know how to help their child or how to help the rest of the family. The Children's Disability Network Teams, CDNT, are established, but because they are understaffed people are being told that their child is on a waiting list and will be seen in 2024 or 2025 for speech and language therapy, or occupational therapy and so forth. These are proven programmes that work. Has the HSE shown any interest in them, and in replicating them? Do they work as part of, or in conjunction with, CDNTs? How are the programmes funded? They have charitable status, so are they funded in part by the HSE, or is it purely from their own fund raising? It sounds to me that it is just common sense. Why is this not being replicated throughout the country given their proven track record of working with families and with the evidence to back it up? There are so many families out there crying out for help, How much interaction has there been with the HSE? Is it thinking of rolling this out? Mr. Buttery said it is now part of Sláintecare. I am trying to figure out if this is in conjunction with CDNTs. Parents tell me that the only kind of support they get through the CDNT is online parenting programmes, but they say they are very general. They are not specific to their child. Obviously, every child is different. Some of the information is helpful and parents will do any course that will help their child. However, many times they are offered a course they have already done, and if they do not do it they are told their child will be taken off the list. There is this kind of attitude. I am asking how this fits in with the CDNT and if it is going to be something that is replicated.

Ms Cherie Tyner:

There were a couple of questions related to our funding, of which 70% is through selling our evidence-based training programmes to services across community health, education and disability. That also includes our supervision and outcome tracking packages. The rest we raise ourselves. We invested €90,000 of our reserves in development of the Parents Plus special needs programme, which is for families raising a child aged 11 to 24, with an intellectual disability. That is because the child could be going through adolescence earlier. However, with an intellectual disability the child could still have those needs at 23 or 24. From fundraising through different sources we secured €200,000 and used that to sponsor services across family resource centres and education, and any service that was coming into contact with families with intellectual disabilities. We are trying our best. We are probably one of the only charities in the country with such a significant impact, but which does not receive one service level agreement or arrangement. I have been knocking on doors. I have been contacting Deputies, Senators and everyone. I actually do not know whom to speak to. All I was told was that at the moment disability did not fall under this person or that person. We are not here today to criticise. I am delighted to see Mr. Buttery. I think this is about all of us coming together. We have solutions relating to what the Deputy has referred to with those parents presenting to her. I have extended family who have done the exact same thing. They go to a Deputy because they are at their wits' end.

It is the reason the programme was developed. My colleague, Dr. John Sharry, who is our clinical director, spoke succinctly when he said that doing the focus groups and developing this programme with families affected by intellectual disability and the services set up to support them, has been a humbling experience given what they are having to experience. Families are worried that they would be criticised and they are worried that their child would be demonised. There are worried they would be excommunicated from the community. Mr. McSweeney and Ms Kerrigan can speak about this more validly than me. I am just articulating the stories that were told to us. For example, perhaps there are sexual difficulties because the child does not understand that he or she is in a public place, and maybe the child might masturbate or they might punch somebody. These are the stories we have been told. Parents are really worried that if they said anything to the services they would be before Tusla. Parents are isolated because the child is going on a bus to school and they see nobody. We develop the programme in response to those needs.

The programme has all of the topics that the parents decide have decided they need. When one asks is it relevant to the Parents Plus special needs programme, PPSN, structure, it could not be more relevant. It supports and enhances all of the principles of Progressing Disability in the context of family-centred practice and evidence base. As a charity we are building the capacity of professional teams in terms of their ability to track outcomes and evaluate. For me personally - and maybe I am not going to help myself here - I hate waste. I hate wasting money. We set up as a charity so that we could provide these programmes at low cost so they were affordable for all services. From that perspective they absolutely fit in, support and enhance the delivery of Progressing Disability.

There was another question. Perhaps Mr. Buttery could come in here.

Mr. Matt Buttery:

There are a number of points that overlap and there will be some differences also. I tried to do some maths last night so I can tell the committee that there are at least four Enable Ireland services that are using Stepping Stones. I believe that there are 12 HSE-funded services that are using Stepping Stones Triple P. It is a little hard to gauge the numbers. I believe we are probably reaching about 3% of parents who are dealing with developmental disability. This is over a nine-year period. If we compare this to the Australian example, which I have supplied to the committee, we see that in a relatively short period of time 38% of parents did engage. Of course, not all parents will want to engage. Some parents feel they do not need this help or support. We should not be telling parents what to do. This is about empowering parents, encouraging their self-regulation and helping them to set their own goals for their own families.

Stepping Stones fits perfectly with what the children's disability network teams, CDNTs, are delivering. It is a shame in some ways that St. Helena's representatives are not here because, as Deputy Ellis can also probably testify, there is a lovely partnership going on there. St. Helena's is one of the family resource centres that is funded by Tusla. There are some prevention, partnership and family support programme staff, PPFS, there who are delivering Stepping Stones Triple P through the family resource centre, which of course delivers a host of other services to families as well, normalising and de-stigmatising access to these sorts of services. Ms Gannon will say that she did not come along initially to Triple P by doing Stepping Stones Triple P. She just did our core programme which is group Triple P. During that process it was identified that her son, who already had ADHD, could potentially have autism and was referred on to the pathway for diagnosis. At that point the team was able to say that it had a specific programme for parents of children with additional needs. Ms Gannon went on to do that and subsequently told me on Monday night that she is going on to do our Fear-Less Triple P programme for parents of children with anxiety management challenges because her son struggles with anxiety as well. Putting in the family resource centre space is a really powerful thing.

Of course, we are working closely with the children's disability network team. Better Finglas is also involved in all of this with the area-based childhood, ABC programme. In this regard, we are seeing a lovely three-legged stool, where we have Tusla, the HSE and the voluntary community sector providing a range of services embedded within which are services for children with disability. Yes, it is part of CDNTs. My appeal is that the responsibility for the provision of these programmes by the CDNTs should be highlighted, whether or not they provide them directly. In Finglas, for example, they are not providing them directly and they are being provided by Tusla and via Barnardos and some of the other voluntary sector providers, but they are working in partnership so they can ensure that parents are getting access to these sorts of services. This is very important in terms of the reach.

The Australian example is a good one because - in exactly the same way as the issues in Ireland - they say that this stuff takes investment and money in order to upskill staff, but we can then bring parents into these programmes. We should make the point very clearly - one that has been recorded and reported quite a bit - that these programmes are not a substitute for the other services the child with additional needs might need. It is not the case that a family will get the parenting programme and then be asked to go away. There was an article in the journal.ieabout someone referring to "Nanny 911", and that it will solve the problems. That is not the case. If we can bring the parent in, that is the primary system within which the child exists and perhaps we can change the way the parent is thinking about the child, about the child's behaviour, and about antecedence around the behaviour.

Again, Ms Gannon gave a great example. Her sister had been giving her own son a chocolate bar to sort of shut him up when she feels that he is being annoying. Ms Gannon told her sister that one does not give a child a chocolate bar to reward bad behaviour, one gives a chocolate bar when he or she has done something good. It was a case of "Wow, she got it" and she picked up a very simple strategy that we can see is quite powerful in terms of rewarding and misbehaviour. There are other examples of children who refused to use sign language to speak because their parents were sometimes getting caught in the nurturers' trap. That is no criticism of the parents because this is natural feeling of the parent wanting to support the child additional needs. By using Stepping Stones we are able to put some simple boundaries in and the child starts to communicate more effectively. We see the child develop and we would see developmental growth in their communication skills and so on.

These programmes are really powerful if we can bring them alongside the other services such as physiotherapy and speech and language therapy, which are important for children with additional needs. We need to normalise and destigmatise parenting programmes for that. There actually is still a stigma associated with parenting programmes. It is less so for parents of children with additional needs but there is still a stigma. We conducted some survey work in the UK just as school started for these children and parents September. There were lots issues they were concerned about, particularly post-Covid, post the lockdowns, and given what is going on in Ukraine and so on. Of those surveyed, 75% said that they felt there was a stigma in asking for help with their parenting. This is despite the fact that they could quite powerfully be supportive of such training.

Holly Cairns (Cork South West, Social Democrats)
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I thank everyone for coming in today and for being willing to share their experiences and insights to help us understand this particular dimension of disability. It is very important for the committee. In all of our discussions with the committee - from healthcare, education and transport - families are always there in the background. Parents, siblings, relations and friends all of course play a valuable role in the life of people with disabilities. Then, when the State fails to provide the services that people and children with disabilities are entitled to, it falls to families to do what they can to sacrifice, to campaign, and fund raise, to pay for all of those things. While of course this is done with love and all of those things, the responsibility should not always fall on the shoulders of families. It is fair to say that we are all struck by the extent of the witnesses' work and the huge difference and impact they are making for families of children with a disabilities, and to consider that there is an urgent need for room for this to be extended to more families.

My first question is for ParentsPlus. In the opening statement, Ms Tyner explained how they hold parents in high esteem and recognise parents as the experts in their families and of their needs. The point stood out to me. From everything the parents have told me, this kind of foundational position is missing in many of the public services. Will ParentsPlus elaborate on why it is important and how it manifests in operational purposes? Ms Tyner outlined the success and challenges of working with CDNTs. We all recognise that they are understaffed. All of the members have parents and families coming to us who are at their wits' end in relation to waiting lists and understaffing and so on. Can ParentsPlus explain how these connections could be developed, and if there are varieties in different regions? What has been the experience from families this regard?

My next question is for Triple P. The scale and impact of Triple P's work is clear. Mr. Buttery has outlined how its programmes assist parents to encourage healthy behaviour and emotions in children with developmental disabilities. Will Mr. Buttery give us a sense of what it looks like practically? What are Triple P's recommendations to ensure that parent training is embedded in the current service and creates outcomes for children and their families?

Ms Cherie Tyner:

I thank Deputy Cairns. I shall address the Deputy's first question around the strength of parents.

I spoke to one of the founders of ParentsPlus. She was a consultant psychiatrist who subsequently retired. She put it very well when she said parents know what is best for their own family and we should respect parents and value that. She said professionals do not always have the solutions and we need to work together to define what goals families will work towards to achieve for themselves. That is exactly what Progressing Disability is about.

Our approach is about empowering parents to realise they are their own resource. That is not to say they will not get speech and language therapy, occupational therapy or any of the other very important and critical services. However, at the end of the day, the family needs to be empowered. The focus of each of our programmes, from the early years right through to the programme for families affected by intellectual disability or parenting when separated, which has three strands, is empowering the parent to support the child and improve outcomes, parents' self-care and looking at the whole family. I will let Ms Ní Raghallaigh or one of the parents speak more succinctly about that. That might tie in well with the piece around understaffing.

With regard to the special needs programme in particular, we are now working with services to identify parents who can be co-facilitators of this evidence-based programme. Ms Kerrigan is one of them and Mr. McSweeney is another. The beauty of that is having parents and a professional, Ms Ní Raghallaigh, who is a speech and language therapist trained in all of the programmes and sees the impact. She has worked in the HSE for 20-odd years. I apologise for giving away her secrets. She has worked in a special school and sees the value of working with families in this way. She has steered much of this as well and parents feel respect. Not every parent is in a position to become a co-facilitator, but we recognise the value that can add. The parents can speak to that further.

With regard to the question around understaffing, there are a number of issues. There has been significant research to show that very often when resources are slim, what will create the biggest impact is the thing that is pulled first. We have said, and Mr. Buttery has talked about it, that all the evidence shows the impact parents can make to improve outcomes when they are given evidence-based tools tailored to their family. It shows the impact not just for the child with disability, but the siblings in the house who may be mini-carers at the age of four or security guards in Tesco who make sure the child does not flee. That community is significant.

From our experience of working with this charity and all of the work we have done with the services for 25 years, especially in disability services, they are contacting us to say they do not have funding to train in our programme. We know what it is happening. It is not a criticism. We feel panicked, because we are trying to get money to fund them to deliver the programmes. It is not a churn and burn, with which I have an issue. We cannot just throw money at it to get everyone trained in these parenting programmes. It is about the planning and working to build clusters of networks in communities across services. I might only have one speech and language therapist on my team who is available to train in the programme, but someone else might have an occupational therapist in another town. It is about post-training implementation support.

We have an evidence-based quality protocol built into the programme. We are building up the skills of the progressing disability network teams in order that they will have the ability to track outcomes and evaluate themselves. We give two free supervision sessions, post training, because we have recognised that all the evidence shows that once a supervision component is added, that is where the magic happens. We could charge for it, but our focus is on impact.

Maybe Mr. McSweeney or Ms Kerrigan wishes to add something about their experience as parents and about the focus on the strengths of parents and empowering them through the programmes they have attended. Maybe they will speak about becoming facilitators.

Ms Niamh Kerrigan:

I have a daughter, Lauren, who is 18. She has an intellectual disability. She has autism and speech and language and cognitive disability. My journey when Lauren was born was a very tough one. She was not able to communicate - I am sorry. I am getting upset. It is nerves, too.

Michael Moynihan (Cork North West, Fianna Fail)
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You do not need to apologise.

Ms Niamh Kerrigan:

My journey starting with Lauren was tough because there was no communication. I had to fight for everything through the years. I even had to fight to get her into school, because she was refused from her first school before she had even walked in the door. I first heard about this programme from Ms Ní Raghallaigh when my daughter was eventually diagnosed at the age of 12 - privately - with an intellectual disability. She started in a special school and that was when I met Ms Ní Raghallaigh who was a speech therapist there at the time.

Ms Ní Raghallaigh was doing the special needs programme which the school was piloting. She asked whether I wished to attend. To be honest, at first, like most parents I thought I was being offered the programme and would not get the six half-hour speech therapies this year or whatever the case may be. However, it was explained that was not the case and one of the subjects the course would cover was planning for the future. I did not know what was going to happen with Lauren when she left school. I just knew that she obviously was not going on to college and she could not get a job. I did not know where we stood. I thought I would go on this course to see what it was all about.

Never have I been enlightened as much as I was on that programme. I was in a room full of parents who were experiencing the same things I was - sorry. It was a safe place and we were able to help each other. It felt as though my child was not different from everybody else's child. I did not have the possibility of talking to other parents at the school gates because Lauren was going to a special school. She was picked up from home every day and brought in by private bus. I did not have that community.

This programme formed such a community for me and it helped me realise I was doing an injustice to my daughter because I was protecting her too much. She did not even make her own lunches. She was never left in the house because it might burn down if she was there by herself. I never knew what she might do. In this programme, I learned how to make, or give, my child that ability to be independent. I realised that other parents were doing this and I should be doing so, too. I realised I was doing a terrible disservice to my own daughter.

The programme helped me to grow that to the stage my daughter is 18. She is in adult services, which I learned about in the programme as well. She is getting two buses there by herself. Since September, for the first time, she has walked into a shop and bought her own things. It was all from the support I got through the programme. It was the first time I had ever been offered this. I had never been offered anything beforehand. When she was two, Lauren broke my nose and I was crying down the phone to the district nurse asking for help because of the tantrums Lauren would throw. Nobody was coming back to help me. Nothing was there. If I had known about programmes such as this when she was younger, I guarantee I would have done them then and I think my journey would have been smoother than it has been until now.

Michael Moynihan (Cork North West, Fianna Fail)
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Well done.

Mr. Wayne McSweeney:

Our story was much the same. For years, we fumbled about in the dark. Services were very intermittent. I was offered an opportunity to take part in a focus group for ParentsPlus, which I thought was just another one of these things thrown at us that would not offer any support. I said I would go because I thought there would be someone there to whom I could complain, give out or vent. We met 14 other people there who were very similar to us and whose experiences mirrored ours. As Ms Kerrigan said, it was a very safe space to be. We could say the things we had been thinking and did not wish anybody else to hear. We could share our worries and anxieties.

The beautiful thing about the course was that there were 14 experts from a range of different areas that we could tap into. Everybody there was at a different stage in their journey. Some children were aged six or seven so their parent or parents were just at the beginning, others were in the middle and there were people at the end. It was funny to have 14 or 16 people, some of whom had experienced negative home lives, social lives and all of that, all laughing like children because they had found their tribe. They understood us and we understood them. There was a great sharing of information and this felt like progress where for years there did not seem to be any progress. It was ours and something we could share with the people in the room. The group was an invaluable experience.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Mr. McSweeney.

Mr. Matt Buttery:

I thank Deputy Cairns for her questions. She asked for us to give a practical insight into the programme. Obviously the programmes have multiple delivery formats, starting with very light-touch, one-to-one interventions. The most common group programme we deliver is a nine-week programme. In fact, three weeks are telephone calls so it is really a six-week group programme. Through telephone calls, parents apply and start to implement the strategies that they have set. The programme is family-centred and parents set their own goals, which is very much in the same vein as what is done by Parents Plus.

The key principle of Triple P is self-regulation. We promote parental self-regulation. We give parents skills and support them to develop their self-management skills and self-efficacy. We help them understand their own personal agency to overcome challenges, which perhaps they have seen in the past, having tried to this a thousand times but nothing has worked. We help parents to acknowledge that, and sympathise with them, but we show some strategies that other people have tried and ask if they would like to have a go at one of those strategies. It is about helping parents to problem-solve so that we create self-efficient parents. That is self-regulation.

In summary, self-regulation never really answers a parent when he or she asks what he or she can do about something. Many parents ask that question but really they are asking for somebody to listen to them and give them reflective space. Usually a good Triple P practitioner will tell a parent they have asked a really interesting question, outline what they believe they have heard the parent say and ask if that is correct. They may then say: "Gosh, I get it, you are worried about this or that but what do you think and which of the strategies looked at in the course would you like to have a go at?" That approach empowers parents, gives them choices, ensures they set goals and manage their own plan. They are involved in the assessment. When one does some level of assessment at the start of group Triple P or any Triple P programme one involves the parents. Obviously they fill out the questionnaires but a practitioner feeds back the results to them at the beginning and end so they can see the journey they have gone on. Parents come up with a parenting plan based on their understanding of their child's interaction in the family environment and they have that individual assessment and support.

Triple P introduces a range of strategies across the seven core principles of Triple T, namely, ensure a safe and interesting environment for children; provide a positive learning environment; use assertive discipline; have realistic expectations of ourselves and our children; adapt to having a child with additional needs; be part of a community; and take care of ourselves as parents. We take parents through a range of strategies in a predefined order. The first is thinking about developing a good relationship with one's child, which is the bridge over which everything else goes. Sometimes parents come to parenting programmes and say their child does this and they need a strategy and they ask what they should do. We will do a self-reflective piece but the key is that if parents do not have a positive relationship with their child or the relationship has broken down for various reasons, there is no bridge to go across when it comes to managing misbehaving. Often, misbehaviour stems from the child seeking attention and perhaps the child has learned, in a dysfunctional manner, that if he or she is quiet and plays nicely, he or she does not get any attention but if he or she starts to kick off, his or her mum or dad gives all the attention the child wants. As practitioners, we talk about these situations being parenting traps but we can all fall into them. There is no judgment. Ms Gannon gave the example of a parent giving a child a chocolate bar to be quiet instead of saying, "Well done, you have been amazing; here is your chocolate bar." The child still gets a chocolate bar but we can see the difference in terms of the behaviour that approach encourages.

We try to open parents' minds of parents to what they can do and give them practical things they can apply from week one to see changes. Next, we talk about how to encourage desirable behaviour and praise children for doing the right things. If children are playing nicely, we tell parents they should not to leave them alone but get involved by giving words of praise and telling their children what they love about the play. We assure parents that their children will learn from them that this is the way they will get their needs met and receive praise. We then teach new skills and behaviours, explain practical ways that parents can help their children to develop and show them how to manage when children misbehave. We try to help parents to think about putting a plan together and about antecedents when it comes to managing misbehaviour. We encourage the to analyse what happened before the misbehaviour, see whether there is something they can change about the environment and suggest solutions. Perhaps parents can move an item that has been knocked down or thrown on the floor to a higher spot. That is a simple way to change the environment so that the behaviour does not become an issue.

After those first five sessions of Triple P, the parent will have a plan and we provide three telephone calls to provide support. There can be drop-ins to support the parent put the plan into practice. Finally, there is a night session, which is a wrap-up celebration where we really think about maintenance and how parents can go on from there.

The previous speakers shared their experiences very powerfully. One of the most powerful things is to connect with parents who have been through a similar journey. Have I given the Deputy an insight into our programme?

Holly Cairns (Cork South West, Social Democrats)
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Yes, that is great.

Mr. Matt Buttery:

I alluded to one of our recommendations. As regards the CDNTs, there should be clear accountability for the provision of evidence-based parenting programmes that have been assessed by others. The What Works Network says we are evidence-based. It is not us saying we are evidence based but other people saying that independently. Workforce development should be funded so that, as we have said, there is no need to look for charitable funding. Whether the CDNTs deliver that directly or through partners, working with Tusla, the ABCs or the voluntary sector, that is for local areas to decide.

I referred to the three-legged stool earlier. That is very important. The prevention work done by Tusla is so important in this. Tusla would say, and this is on public record, that many of the cases it sees of a more severe level actually have a child with disabilities in the mix. The lack of preventative done there emphasises the need for that preventative work to be done earlier. We must find cost-effective scalable solutions.

One size does not fit all when it comes to the provision of these programmes. I will forward details of the Australian roll-out. We have a multi-level system of programmes of different levels of intensity. The key is that we, as professionals, do not tell parents they have a lot of problems so they will need the intensive programme, but that we ask them what they want to engage in, what would be helpful to them at this moment in time and what capacity do they have. Sometimes, even though there may be complex problems, the parent may have the capacity to engage in one thing and may have one burning issue they need to solve for their child, such as bedtime or toileting issues. Let us, therefore, meet parents with a level of support corresponding to where they are at.

There is a public health approach, which fits really well with the national model of parenting in Ireland. I refer to the multi-level proportionate universalism, which allows us to generate a 38% reach. If we just store these up later on in pathways, we will create a problem for ourselves whereas we should push them into the preventative space.

Programmes like Triple P can be used to train a multidisciplinary workforce to deliver them. Members may have noticed that there is no professional degree that people do to become a parenting practitioner and practitioners come from all sorts of professional disciplines. That is one of the strengths when it comes to the Deputy's question of how we ensure provision. Whether someone is a speech and language therapist, a family support worker, a psychologist or a nurse, whatever his or her background, if someone is working with a family, there is absolutely no reason we cannot upskill that person to deliver this programme. The Triple P programme could be and is delivered by the existing workforce. We can think carefully about where we position programmes, so whether it is in the voluntary sector and whether we are engaging with parent facilitators to support us as well. These models provide real flexibility to think about what works best with the local resources we have in our areas.

Michael Moynihan (Cork North West, Fianna Fail)
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The questions and evidence we have heard this morning have been powerful. It is the lived experience to which we refer at all times. As with our meetings, we are under time constraints but it is really powerful to hear from the witnesses.

Sometimes the evidence that is put before the committee does not get picked up by mainstream media, but a large number of people tune in looking for guidance or hope, and I am mindful of that this morning.

Ms Ciara N? Raghallaigh:

I worked as a speech and language therapist on the northside of Dublin for 28 years. I am a parent myself but do not have a young person with a disability in my family. However, as a health and social care professional accessing Parents Plus programmes over the years, I am more family centred as a speech and language therapist now since I have started delivering the early years programme, which I have run in the special school in our area so that families, as they are on their journey, can have a smoother journey, such as Niamh, who told me she would have had a smoother journey had she accessed a programme like this with me earlier on. Health and social care professionals on children's disability network teams, CDNTs, in primary care can train in these programmes which can be run with children who are typically developing, but I always deliver the courses with families who have children with an intellectual disability.

My ideal would be that families like Niamh and Wayne could access the early years programme on their journey, a few years after which they could come on the children's programme and, for teenagers, they could come on the adolescent programme. I now have an extra choice as a practitioner in that this programme launched in September 2020 so I can chose to deliver the special needs programme with families and they get the common experience, as Wayne explained, whereby there are 16 other parents in the room who get what they are at and understand the boat they are in. This programme was developed with parents like Wayne and Niamh who came to our focus groups. A total of 97 families asked us to include all the topics on this course. These were Irish parents choosing the topics they wanted to cover. They wanted a safe space to reflect on things, like Matt has said, such as their own self-care and how the other children were doing when there was a young person with additional needs in the family. The outcomes in the randomised controlled trial and the evidence-base with Trinity College Dublin showed that Niamh and Wayne, by coming on the programme, made gains in the goals they had set for their family. Their parental stress decreased by the end of the course.

One of the questions was how we have more reach so that programmes like this are available. We have trained hundreds of people and I have seen more than a thousand facilitators between Ireland, the UK and Singapore in this programme but the question is how we encourage those professionals or parent facilitators to have the opportunity to deliver them. I was speaking yesterday on the phone to a therapist on one of the children's disability teams. It is great that she is rolling out the programme at the moment but it is very challenging for her. She has a caseload as a speech and language therapist, so finding the time to be able to deliver this programme with 16 parents on top of her very busy caseload is a problem for the Government to solve. How do we scale up so that the professionals or parents who have trained as facilitators in the special needs programme get the opportunity to do it?

Happily, I have a good news story for 2022 and 2023. The charity Parents Plus is collaborating with Family Carers Ireland, which is a wonderful charity, and it is scaling up what it is doing to support parents of young people who have a disability. It is going to deliver nine of these Parents Plus special needs programmes this year, which is wonderful, and it is groundbreaking in the model it is choosing. It is going to have a parent facilitator like Niamh and a professional like me co-facilitating the course. Niamh and I delivered that online programme together with families in September with the collaboration of Family Carers Ireland. While the good news is that parents could be paid a fee and get paid like me to deliver this course, Niamh has to waive that fee. She cannot accept the fee because she receives carers allowance in Ireland and because her family's income is means tested. I have a huge resource in Niamh as a parent facilitator but I cannot ask her to deliver it again, on her own time and to volunteer her time again. She discovered in 2022 that it takes nearly a day a week for us to plan and deliver the course together. I would love to have Niamh delivering the course with me again. She is such a resource that it is even more attractive for parents to come on a course with me if they know Niamh gets where they are at. The means testing is an issue. I am ringing around the parent facilitators in Ireland at the moment asking them if they will deliver another course this year with Family Carers Ireland, and a number of them are saying they cannot. If the Department of Social Protection finds out they take a fee for the course, their carers allowance will be taken from them. Niamh is a huge resource as an expert working with us in our charity.

We have wonderful agencies and family resource centres around the country, and the Down Syndrome Centre charity is delivering this course for families, so many more people are finding out about this course, which is great. I had 40 parents on an information session on Tuesday night. They heard about it from Family Carers Ireland and from a Remember Us club Niamh is part of, but when I asked if they had ever heard of this course before, they said they had not. It is new enough and is only launched since September 2020. How do we get the word out there that for people like Niamh and Wayne, because the power of parents coming together to do an evidence-based programme is a huge support. As a professional, I will not come up with the ideas Niamh and Wayne come up with because I do not have the lived experience. We have a massive resource and opportunity here in Ireland for parent facilitators.

Parents are more likely to come on a course if Niamh is running it with me because they know it is not another professional telling them what to do. Niamh and Wayne understand where they are at.

Mr. Matt Buttery:

Questions were asked about the best way to deliver, evidencing and training. I will try to answer a few quickly. Regarding the question from Deputy Ellis, there is no one way or best way to deliver. We offer 60- to 90-minute seminars, which have asset-focused messaging and pose questions like what children with disabilities need to do well in life and how we can support them as their parents, through to one-to-one and one-to-four 15- to 30-minute sessions, through to that nine-week group programme, which, as I explained, involves two-hour sessions plus three phone calls, through to a ten-week one-to-one programme, and the effect sizes across all of them are good when it comes to evidencing. This goes back to giving the parents choice about the capacity they have to engage, but it also concerns professionals. We are talking about capacity issues. While I may not have the capacity to run a group, I could do a few one-to-one sessions with someone because I am there anyway doing something else, so why not also talk about this at the same time. There is no one best way, which is why we need a public health and mutli-level approach.

Regarding evidencing and other things we have talked about, the gold standard is a high-quality randomised control trial with effective management of control groups, where thought has been given about intention to treat. There is detail behind what that looks like. As Ms Tyner said very clearly, it is important we give agencies the tools to measure the effectiveness of the programme for themselves. More importantly, as I said in my answer to Deputy Cairns, we need to feed that information back to parents as well. In a similar way, we have an online system which practitioners can use and feed back those results to parents. It does all the maths for them in terms of computing.

Regarding training, something like Stepping Stones Triple P involves a three-day training programme. It is an active skills programme. We are about trying to give parents active skills they can try. About six weeks later, they come to a pre-accreditation workshop and then go through an accreditation session where they need to demonstrate their skills, in particular their ability to promote self-regulation in the parents they are working with. It is about not getting caught in a trap of giving answers or advice, but rather asking good questions and pointing back to the material because the material works. It is a question of how we can help parents access it and apply it in their families.

Concerning integration of that within the community, implementation of evidence-based programmes is as important as the strength of evidence of the programmes, by which I mean the fidelity with which these programmes are implemented and the contextual fit of these programmes. It can be thought of as a three-part sum: the strength of evidence of the programme multiplied by the fidelity of the implementation multiplied by the contextual fit equals the socially significant outcome you want to achieve. We use a science-based implementation framework. We work from a first inquiry of thinking about delivering a programme all the way through to commitment, contracting, thinking through, planning implementation, supervision supports, how outcomes are to be measured, where the books are going to be, how parents are going to get there, the venue and whether transport needs to be arranged. It is about ensuring that by the time practitioners get in the room, they know they are the right practitioners and, ideally, they have a date in the diary of when they are going to be delivering this programme to parents, because it makes that training experience a real situation of needing to know how to deliver it. Critically important is that we continue to support the sustainability and maintenance of the programme, which we do as a matter of course. We have a team of implementation consultants who do that. That is part of integrating this into the community.

The other part of integrating is what I talked about in terms of multi-agency working. I had a slightly different figure of 86 on a waiting list, but it is not very different from the one in Finglas where there is good multi-agency work between the children's disability network team, CDNT, social workers, Tusla prevention, partnership and family support, PPFS, within the family resource centre, the wider team within Barnardos and the other agencies within Better Finglas. I wanted to raise that today because it is a good example of a multi-agency team working together to promote outcomes for parents of children and children with disabilities.

Erin McGreehan (Fianna Fail)
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I welcome the witnesses to the committee. As a mammy, it has been an interesting listen. I have learned a few things. This type of learning is for every parent. We engage in courses to do many different things and parenting courses, as Mr. Buttery said, are often looked at with prejudice or scepticism, and they should not be. We should all be learning to improve ourselves in many different ways. The HSE will be appearing before the committee in the next part of this meeting. The head of operations for disability services will be appearing. How can we advocate for the witness organisations in the next meeting? What is the institutional blind spot that is resulting in this not being a default? What can we ask for in the next meeting? The next meeting is not for us; it is for the witnesses' organisations and the families they deal with.

I am interested in the family carers roll-out. It seems fantastic. Who is paying for that-----

Ms Cherie Tyner:

Us again. Apologies for speaking out of turn.

Erin McGreehan (Fianna Fail)
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Where is the funding coming from for that? Why is it not State-led? Obviously, the witnesses' organisations have gone to the State for the roll-out. Again, we are going to the volunteer sector to ensure this is reaching the right families at the right time, although probably too late. I am interested in the case study in Australia, which stated 38% of the population. Again we are seeing a low uptake but great results. There was a huge positive result on that 38%. Has it been rolled out again in Australia? Have more parents taken it up? Has the service in general improved, by which I mean the institutional service or the equivalent of the HSE? I assume the roll-out has been improved because everything has improved, and children are at home so much longer in the day than they are in school or in therapies. Home is the centre. I presume it all improves. I would like to hear more about that.

Ms Cherie Tyner:

There were three questions when the evidence piece is added. In terms of what is needed, in our experience over 25 years, having worked with more than 1,000 services and professionals, it is funding. If I were to ring the office now, there will have been a phone call from somebody looking for funding to train in our programmes. Regarding disability services, we need senior management buy-in. It is almost like we need a campaign of education for professionals on the urgency and importance of delivering parenting interventions that are tailored to the needs of families. We are talking in the context of disability, which means it is needed from the early years and it must be accessible and equitable. Families contact me saying they saw on an online board forum that someone was doing the Parents Plus special needs programme or the early years programme and they ask us where can they get it. We are either able to signpost them or not. It is unfair.

I have come back to the charitable sector, not because I do not like the commercial sector, but because I see the value, social impact and what we can do with resources that are not huge but also with a coming together of minds. It is about collaboration and post-training implementation support, embedding skills within teams, and understanding education for services that are not going to run an eight-week group with 14 parents but will get value from this training which they will bring to their individual practice. Public health nurses are always saying the programmes are perfect for them because, in a household where there is a baby or a toddler, they are able to draw on different aspect tailored to the needs of that family.

We have significant experience in building those interagency networks, for example Parenting Monaghan, the Parent Hub Donegal and Parenting Cavan. At the moment funding has stopped for the mid-west. The parenting and separated project that came through a number of services in Limerick and beyond started through recommendations from some of the judges in the area. We are funding that. In regard to the question on Family Carers Ireland there are actually a number of funding streams. However, that is a piece of a bigger picture that we are working on.

During lockdown, if life was bad before it, life was really bad. I am not allowed to say that but horrific things happened to families. As a charity we had to respond to that. We had to recognise that we were driving this into a space that nobody could see. If we do not see it then we can forget about it. We cannot forget about it because we are answering the phone every day. We recognised that we needed to support families to access evidence-based programmes. Therefore, we worked with Parentline and started funding online delivery of our programmes accessible through that organisation. Such was the impact of that work that we applied for and gratefully received €300,000 from the RTÉ "Late Late Toy Show" programme to expand because the need was so significant. Within that we have expanded our work for online direct delivery to parents of our programmes. They can decide what they need, whether it is adolescence, early years, separation, our ADHD programme or the special needs programme. That is through Parentline, ADHD Ireland, Family Carers Ireland and now we are expanding into the network of family resource centres as well.

We are meant to reach 2,000 children and parents in that project. We had to close the waiting list within a couple of days because the need was so big. I know we are here today only to talk about disability, parenting interventions and family centred practice but I am telling the committee members that families need more than a leaflet. They need more than a little bit of information. They are crying out. We have this idea that parenting interventions are only for a certain cohort of society. That is rubbish. Maybe I am not speaking eloquently about it but I am vexed.

Michael Moynihan (Cork North West, Fianna Fail)
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The point is well made.

Ms Cherie Tyner:

We just need to pool resources. We are coming with solutions. We set up as a charity in order to provide the evidence-based programmes at a reasonable, affordable rate and we will work with the services. That is our mission, to equip services with evidence-based tools so that they can improve outcomes for families in this country. A meta-analysis was done by Professor Alan Carr in University College Dublin with a Parents Plus evidence base with more than 1,000 families. It showed a significant impact such as reduction in behaviours, improvement in emotional well-being and health, the well-being of parents. These are all aspects that if we get right then the future is brighter. If we get it wrong it is like we wait for the fire. It also costs much more, financially and emotionally.

Seán Canney (Galway East, Independent)
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I have been listening intently to what has been said by the witnesses. For me as a public representative on the disability matters committee I often hear, and feel, the frustration that here we have something that can work, and will work, but is not being rolled out other than through the grace of God and a few pounds from the "Late Late Show" and a few other things like that. It seems ridiculous that we have an implementation tool to get services and supports to people. In my constituency in Galway East many of the parents who have children with disabilities find it frustrating that they cannot get the supports, they do not know where to go and do not know how to deal with the situation because they themselves are trying to come to terms with the fact that their child has a disability. There are many things going on in their minds.

I believe from listening this morning that we have a good opportunity here. As a committee we need to make sure that the Department understands what Parents Plus is at, that parents who will take on the role of counselling and helping other parents are not penalised with their carer's allowance being removed or anything like that. We are actually rolling out a service that everybody needs. Parents Plus knows how to do it and is articulating the way to do it. The concern for me is that as a committee we should be taking this forward to the Government to say "How can we fund this properly?" and make sure we are putting something in place that everybody needs. It is a crying need for every family with a child with a disability.

It is important that we hear what the witness is saying. Is there anything she wants to offer me in regard to giving guidance as to how the committee should present what she is doing in a way that will get the support to continue and to grow it in order that every family will know where it is at? I was struck by the remark that "a leaflet in the door does not solve the problems". That message is important to get across, that just getting a leaflet with something in it telling you how to do this, that or the other, is not enough. Huge interaction is required as well. Will someone give us a little more guidance on what we should say, as a committee and as members of the committee?

Ms Ciara N? Raghallaigh:

The Senator and the Deputy asked us what our ask would be if meeting the HSE in the next session. For me the ask is that all professionals on the CDNT would train on this special needs programme. For me as a speech and language therapist, when I attend facilitation training, as Ms Kerrigan has, I am learning how to be a strength-based practitioner. I have a core job, as had Ms Kerrigan when she was delivering this programme. This is what Mr. Buttery also referred to. We are to empower the 14 families in the room to come up with solutions. Even if a health and social care professional on those teams never delivers the course, by coming on the training it influences our practice as clinicians so that when I meet a parent, like Ms Kerrigan, I am thinking more holistically rather than just down the lens as a speech and language therapist.

The responsibility under the UNCRPD is that professionals working with families with a disability are to think of the whole family, not just the young person with a disability. That is what our training does. It makes us think more holistically. As a speech and language therapist my practice as a clinician has improved so much because I am not just thinking of the speech and language lens. Also, these programmes allow me to work with families like Ms Kerrigan's on their communication in the context of the whole family. I achieve my speech and language objectives by getting Ms Kerrigan to come on a course with me but I am also giving her help. These courses are not a replacement for direct work with speech and language therapists and occupational therapists but as a clinician it gave me much more appreciation. I am humbled as a clinician when I hear the stories of families and what they are dealing with on their journey raising a young person with special needs. So my ask would be that we ask that all professionals on CDNTs should train in the special needs programme even if they never deliver it. They just become better clinicians by becoming solution-focused.

Mr. Matt Buttery:

Essentially I think the Deputy asked some similar questions. The key things for us are, as early as possible, all parents need access to services such as these. They do not have to take them up. To clarify, the reach is huge.

In the midlands here, co-funded by Atlantic Philanthropies, we did a population of coached parenting using Triple P and I will be happy to send a summary of this on to the committee. In ten years, that small team in the midlands, led largely by six practitioners in the HSE but working with Barnardos, the libraries and the wider sector, reached 36,000 parents, who went through an evidence-based parenting programme. They achieved between 25% to 30% population reach. If that is compared to Australia, one can see how impressive that is. What is very significant about that roll-out is that one sees benefits for parents who attend, but one is also able to see evidence of a ripple effect of benefits with parents and children who did not attend. The clue is what I talked about with Pamela, the parent I hoped could attend today, and what she said to her sister the other day about the chocolate bar. We found that two thirds of those parents who had not attended the public health campaign we had done on positive parenting had not even heard of Triple P, but of that group two thirds said that they had read the workbook or had been given tips or advice by friends who had attended.

This is not about reaching all parents but is about normalising, de-stigmatising access and recognising that we do not parent in isolation but in community. We will either do what our parents did or we will not do what they did. This is the usual binary choice upon which most of us make these decisions if we are fortunate enough to be parents. We will then ask our friends. We do not always need to get to you if we can get to your friends in order to see an impact and outcome.

I would slightly deviate from what Ms Ní Raghallaigh has said in terms of my ask, in particular in respect of the HSE and the CDNTs. I do not believe we should train everybody as that could be a bit of a waste of money. By all means we should get them to come on the programme so that they can see it in action. Perhaps they may come as parents or observers, or maybe they will get some insight because someone delivers them a briefing session, but we should have very thoughtful implementation of these problems with the CDNTs to work out who are the right staff and who has the capacity to deliver this programme, to ascertain whether there is supervision and support in place for them to deliver it, and to select those people to train them. That does not mean we cannot give access to some of the stuff but we really need that mandate and accountability from the CDNTs.

This is about workforce development but is also about practitioner time. What are practitioners doing with their time and what could they be doing? These interventions work. If one could spend a few hours with a parent doing this intervention, one is fairly much guaranteed that one is going to get positive outcomes. Looking at the evidence, one might get significant outcomes. How can we think about practitioner time and upskilling the workforce to do that?

On the question about Australia, the roll-out was not sustained, as I understand it. Many of the practitioners continued to deliver where they could but there were challenges around what was going on. The Australian Federal Government in the past year has funded our Triple P online system of programmes for any parent across the entire country. By "online", I mean it is self-directed by parents. I am not talking here about what Mr. McSweeney is doing, which I would call virtual. All of our programmes can be delivered virtually by Zoom or Teams. What I mean is that a parent could access the programme, if they wanted to, in a self-directed delivery format. For that, we have eight randomised control trials underpinning its efficacy. One says that it is non-inferior to face-to-face delivery. That does not mean it is right for everybody. It is not the magic bullet, but in respect of accessibility and the question asked by Deputy Ellis about which one is right; none of them are right but we need to give choice and access.

Later this year we will be launching Stepping Stones Triple P online as a self-directed online version with equivalent strength in evidence to the nine-week group and the ten-week one-to-one programme. These are the other things which we could be doing in thinking about making online programmes available across the country. Thoughtful implementation by the CDNTs is my key ask.

Michael Moynihan (Cork North West, Fianna Fail)
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I must leave the meeting for ten minutes because I have a question in the Dáil. I have looked at the question of carers. It comes up nearly every week in respect of secondary benefits and people not being able to move on to the next level. I believe the only solution is that where many people who go on to carer's benefit, they come from stamps-paid employment, after two years of which they then have to go on to the carer's allowance, which is a means-tested payment. Our ask should be that the carer's benefit be extended for the duration of the care needed, that it is reflected on the stamps that have been paid prior to that, and that it is then given as a non-means-tested payment, provided one is giving the full-time care, and that that person can work 18 hours. This is because there is a whole cohort of people there who have had the experience of helping other families. This is something that we as a committee will be looking at as this appears to be the only solution we could possibly get from the Department of Finance and from the Government to try to resolve this. If our witness has any other thoughts on this, he might come back to us separately.

My apologies but I call Mr. McSweeney to speak now, please.

Mr. Wayne McSweeney:

I have been through this whole process and have been on both sides of the fence. As Ms Tyner has said, we were sick to death of getting leaflets in the door and being given things to read. One becomes blind to these things because they were everywhere until we got into programmes like this. I trained as a facilitator and I use it in my own work. I work as a support worker in north Cork and I come in contact with a number of families who support young people who are neurodiverse or live with disabilities. I recognise them in a place where I was years ago. I understand the process of going through supporting somebody with a disability, and going through a process where only they were the focus and everybody else was forgotten about. This is of great importance because there are thousands of men and women out there, mums and dads, doing this together or doing it alone, who feel that they are alone and are not listened to, and that their needs are not being met. Our needs were not being met until I sat in a room with 14 or 16 other people who were exactly the same as us and who had all of the same questions and doubts.

When one supports a young person with a disability, it is a very privileged place to be and one feel so powerless. One can then discover that there are other people there who understand what that person is going through, and that there is a service there which if it is implemented can support that person and help him or her to understand and be connected to people who have been through this process, and who are the experts in respect of carers’ services and things that one can do oneself. This can even be a simple thing - if my child will not eat, or will only eat certain things, what can I do? It is the little day-to-day bits that are very often forgotten about. If one is a lone parent and is raising a child with a disability, when that child wakes up at 3 o’clock in the morning, that person has no support.

There is also the effect that it has on two parents. There are a million different things which need to be considered but parents need something like this because if they are going along, and if they cannot get a service, they doubt themselves and fight this fight. There are thousands of parents out there who need something like this and we have to get it. I thank the committee for its time.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I thank Mr. McSweeney. I call Senator Flynn to speak now, please.

Eileen Flynn (Independent)
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I thank the Chair. I understand that we are we are running tight on time. How does our witnesses’ programme support parents who are disabled and have disabled children? This is of interest to me.

I would also like to ask about the programme around people from ethnic minority groups and poor people within communities. I do not have a significant question other than the first one. The rest of my questions refer to making points about people being poor and not having the finances to be able to get the supports, and to travel, with the cost of living going up as it is. How can we support those people who fall through the gaps?

I agree with Ms Ní Raghallaigh in that every organisation should have the training because when we know better, we perform and do better. That is very important.

There is also the question of access. We need to create the access but, obviously, if it is not funded very well, one is already at a disadvantage. Leaflets going through the door are more often put in the bin. We all see these “No Junk Mail” notices. No matter how important one’s leaflet is, people will not want to read it. The last thing one wants to do is to read a leaflet where there is no action and where the person is not getting the supports. That is no fault of the organisation or the service but is a problem for the person not having access to the service.

I know from being on the Joint Committee on Autism that parents are phenomenal when it comes to being resilient, getting supports and making up for these. I have seen parents coming together in Ardara in Donegal to support children with disabilities in their local community.

It does not matter what that disability is. A parents' group comes together every Monday where they can talk and share information and the children can also interact and connect with one another. There is no funding around that. There is no investment or education. Even though we like to think we have come a long way as a society and there is no longer a stigma with having a disability, unfortunately that is not the case even if we now see access for people in wheelchairs. We have an awful lot of issues to deal with as a society. Although we think we are no longer ashamed of it, we all know the stigma is there.

We can sit here all day and say as a cross-party support committee that we want the best for people with disabilities and their families, of course, but how do we get that? How do we hold the State to account so that it invests in supports and people? We can put what has been said in this meeting down as a recommendation passionately and eloquently. Sometimes we get so passionate, one might think we are being rude but we are not. We are just being very honest which, in my opinion, is lovely to see. We can have all these great ideas but if they are not funded and supported by the Government, how can we roll them out?

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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We are very short on time so I ask witnesses to keep their responses as short as possible.

Ms Cherie Tyner:

I refer to the Senator's question on supporting parents with disabilities. We have an early years parenting programme that is tailored to being delivered on a one-to-one basis with parents who may have an intellectual disability and are raising a child, parents who have mental health problems, or parents whose situation is compounded by the issues they are experiencing, such as deprivation or whatever it may be. We recognise and put in place a programme structure to facilitate and support parents.

The Senator mentioned parents who may be experiencing poverty and their difficulty accessing services. Our mission is to train and supervise services to improve outcomes for families through evidence-based parenting interventions. Those programmes are not to be charged to parents. Parents are to receive them for free. We sponsor the parent books. We sponsor the facilitator manuals. We sponsor areas where there is deprivation. Normally, our requirements for that sponsorship to fund services is that they work with high-need families that are either marginalised, or experiencing poverty or a multitude of difficulties.

I refer to how we deliver it to everyone. I note today we are speaking about disability. For us it is funding. We can give the committee all the statistics on all the services that approach us constantly looking to be sponsored so they can train in and deliver our programmes. However, I do not want money wasted. Again, I think I am doing myself a disservice. It is not a case of throwing money at us and us training thousands. It is about us doing all that planning work. We have 25 years' experience of getting it right in this country and learning from things that happened early on, maybe when we were given funding, whether it was for work individually or with Triple P. It is about responding to the needs of local communities; working on an inter-agency basis; identifying who needs training in our early years programme, our parenting when separated programme, or our ADHD programme; getting the supervision in; building the strengths of those services; and working together across agencies and services and actually making magic happen. That is it in a nutshell.

Mr. Matt Buttery:

I want to mention one specific thing which is that the children's disability network web page has group parenting programmes and I have highlighted the word "Triple P" on that. The HSE is saying we provide this. I have already talked about reach and said that it is low. In terms of the ask one makes of the people who are following on etc., it should be an open door but the provision is not there.

The Senator asked some really important questions. A lovely, randomised control trial was done, I think in Germany, involving parents with intellectual disabilities who had children. What one finds is, in the context of manualised evidence-based programmes, it is important to deliver them in the right order and format because they have been tested and refined in that way. I also talked about the importance of improving the parent-child relationship before we get on to other strategies. However, there is flexibility within the fidelity of that model. What that trial eloquently gave example to was the need to slow down the delivery, take a little bit more time with the families, and give them more support in implementing their practices. The programme did not need to change; the implementation of the programme just adapted to their additional needs.

We also have elements at the very top of our system that are for adjunct issues in the parenting that are affecting the parenting task. We have programmes, such as enhanced Triple P and pathways Triple P, that deal with a person's coping skills and mental health, couple conflicts, and anger management issues that an adult may have. We have other modules that can be flexibly drawn in. The Senator made a very good point about financial hardship and access to these programmes, hence my point about having flexible delivery modes, thinking about providing the opportunity to do things online. In work we did in England, we saw that parents on very low incomes were more likely to attend a remote session because they did not have to organise transport or childcare, but they were as engaged as others. In fact, they were more engaged because there was a degree of "I'm hungry for this".

We as programme providers are working as hard as we can and we need to continue to think about how we can work harder. As a system, we know these programmes work but as for that thoughtful implementation, which I talked about earlier, there is a lot we must do to think about how we ensure equity of access.

Eileen Flynn (Independent)
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To be clear, there is no doubt the witnesses are doing amazing work. We can see that from their contributions this morning. I thank them for coming in and sharing this with the committee.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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While we would love to talk more about this, unfortunately, we have to suspend the meeting to allow the HSE to come in. I thank all the witnesses, including Ms Kerrigan, Ms Tyner, Ms Ní Raghallaigh, Mr. Buttery and Mr. McSweeney, for joining us and sharing with us the very important work they do. We will be raising these issues with the HSE in the next part of the meeting and hopefully we will get some positive responses.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I extend on behalf of the committee a warm welcome to representatives from the HSE. We are joined by: Mr. Bernard O'Regan, head of operations, disability services; Professor Malcolm MacLachlan, clinical lead for the National Clinical Programme for People with Disability, NCPPD; Ms Angela O’Neill, national disability specialist, community operations; and Ms Caroline Canton, national programme co-ordinator, progressing disability services for children and young people.

Witnesses are reminded of the long-standing parliamentary practice 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 could be regarded as damaging to the good name of the person or entity. Therefore, if their statements are potentially defamatory regarding an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such directions.

I am aware that a wide range of issues will be the subject of discussion today. If necessary, further and more detailed information on certain issues raised can be sent to the clerk to the committee for circulation to members. I now call Mr. O'Regan to make his opening statement.

Mr. Bernard O'Regan:

I wish the Vice Chairperson and members of the joint committee a good morning. I thank them for the invitation to attend the committee meeting to give consideration of family-centred practice and parent training interventions including a family-centred practice approach in children's disability network teams, CDNT, individual family service planning, governance and aligning with the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. The Vice Chair already named out my colleagues so I will not repeat those.

The UNCRPD requires us to provide a social model of support that facilitates disabled people to achieve maximum independence. The traditional expert-led model of service provision is no longer fit for purpose. A family-centred model of support aligns with current international best practice and policy direction.

Family-centred practice recognises that families know their child best and professionals bring knowledge, skills and experience in disability. Together, family and team can work towards best possible outcomes for the child to live the life of his or her own choosing.

The family and CDNT focus on what is uniquely important to the child and his or her family in their everyday life and work to achieve the goals they have chosen. Family-centred practice is, therefore, a vehicle for services to better support the child and family outcomes.

From the first contact, service professionals, researchers, planners and policymakers must recognise and strengthen the primacy of the family. Services are based on a partnership between families and team members. The team works with the child and family to explore what everyday life is like and identify the family’s choices, their priorities and how to achieve them and how the team can support them.

Family-centred practice and interdisciplinary teamworking are recognised worldwide as optimal to support children with disabilities and their families to reach their best possible outcomes. There is extensive literature supporting the model.

Each family’s individual family support plan, IFSP, enables joint priority setting and collaborative working between families and staff. The HSE has developed and issued guidance and tools for staff to assist in this work.

There are broadly three types of support provided to children and families. The support required is determined by the needs of the child and family and set out in the IFSP. Each level of evidence-based support has an important part to play in meeting the needs of a child.

Universal supports are used where a child has needs that many children with disabilities and their families share. Universal supports are usually delivered through information sessions, talks and workshops for families on topics such as sleep, toilet training and communications.

Targeted supports are helpful for needs that some, but not all, children with disabilities and their families share. They include well-recognised and evidence-based programmes for children and-or parents. Bringing children together is more enjoyable for them and they learn from each other. Bringing families together with common and shared challenges can be powerful.

Individual supports address a child or family’s specific individual needs. This can be the child’s movement difficulties, feeding and communication difficulties. As well as delivering a family-centred practice approach, our CDNTs must also incorporate the requirement to provide existing assessment and intervention services as necessary.

The following principles are fundamental: families and services listen to the child and strive to achieve the best possible outcomes for that child; families are fully capable of making informed choices and acting on their choices; parent-carers have the ultimate responsibility for the care of their children and for all decisions made about them; services exist to support children and families to attain the best possible outcomes; interventions are appropriate to the needs of the child and family and emphasise capacity-building, strengthening existing skill sets, promoting the acquisition of new skills, medical care and other supports; and children, families and service providers all benefit most when services are based on true collaborative partnerships between families and professionals.

We are happy to answer any questions committee members may have. We also submitted a separate briefing paper for members' information.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I thank Mr. O'Regan. I will now call members according the speaking rota. Deputy Cairns will speak first.

Holly Cairns (Cork South West, Social Democrats)
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I welcome everyone to the committee. I thank them for being here today. While I welcome everything Mr. O'Regan said, we all know the reality faced by children with disabilities and their families is very different.

We heard from Ms Kerrigan, who has an 18 year old daughter. She recalled crying down the phone to the district nurse. Her daughter did not get an assessment until she was 12. It is the job of the committee to impress upon the HSE the urgency and importance of these issues. It is difficult to articulate them, but my personal experience from my constituency office is that, of all the struggles going on in society at present with housing, trolleys and so on, the people I meet who are most at the end of their tether are the parents of children with disabilities who cannot access the help and support their children are entitled to. What is the single biggest measure the HSE can offer to assist families in the provision of the service children are legally entitled to? In a recent discussion at a meeting of the Joint Committee on Children, Equality, Disability, Integration and Youth, we heard that 91% of children do not receive their assessments of need within the timeframe prescribed and mandated by law. Will the witnesses elaborate on the current condition of the assessment-of-need process and the extreme waiting times families are enduring? I have repeatedly raised the issue of staffing levels in the CDNTs at meetings of this committee and the joint Committee on Children, Equality, Disability, Integration and Youth. The most recent figures available show that there are still a large number of vacancies in CDNTs. Will the HSE update the committee on how many of the teams are fully staffed and provide a breakdown on the percentage staffing levels of the others? Does the HSE have any proposals on staffing and progressing disability services? This is a massive issue. What is being done differently since the last time we met in order to address this matter? We know the system was not working previously?

Families continuously raise the issue of a lack of contact and meaningful engagement. The family forums were supposed to be an important pillar of progressing disability services. Will the HSE update the committee on the status of the family forums since it last reported in June? I increasingly hear from parents about practices of indirect therapy whereby waiting times for assessments and therapies are so long that therapists are giving parents basic instruction on exercises to complete with their children. While exercises and activities between therapy sessions are an important part of the process - we heard a lot about empowering parents in the previous session - these indirect therapies are a kind of stop-gap before the therapeutic process even begins in many of these cases. Will the HSE comment on the practice and what it says about the children's disability services and how they are working?

Mr. Bernard O'Regan:

I will ask my colleagues to comment because they will be able to answer some of the Deputy's questions in more detail. However, I will make some provisional comments about the staffing and some of measures we are taking.

We are currently finalising a census report. It will be available in the next few days. I will send a copy to the committee. The report will contain information on the current levels of staffing of all the teams. By and large, the data shows that there has been a small - and it is small - increase in the number of staff that are now working in the CDNTs. At the same time, we have been fortunate that the Government has provided some additional funding to increase the levels of staffing. While the number of staff employed has increased, the percentage gap has widened a little, although there are more staff working in the service. I will forward that report to the clerk in the next few days once it is finalised.

In respect of measures that have been undertaken for recruitment. A number of things are going on at the moment. We are in the process of an international recruitment campaign. We are working with colleagues to support the clinical placements those staff will need. We will go out to the colleges in the next week or two to try to secure the students who will graduate this September. Work is ongoing between the HSE, the Department of Health and the Department of Children, Equality, Disability, Integration and Youth on engaging with the Department of Further and Higher Education, Research, Innovation and Science and the colleges on increasing capacity of the latter and seeing what can be done about that. We will soon launch a campaign for further recruitment, specifically for disability services. That is in addition to what each of the lead organisations and the different CHOs are doing and they are all actively recruiting as well. Part of the challenge we have in recruitment is that there is a limited pool of people we are looking to draw from, whether it is national or international, and we are also competing internally within the HSE. Speech and language therapists are not only required for disability services. Other parts of the HSE are also looking to draw from that pool so we need to make sure that working in children's services is as attractive as possible while at the same time trying to make the pool of people we can draw from as wide as possible.

Will Ms O'Neill respond about the assessment of needs?

Ms Angela O'Neill:

Assessment of need remains a significant challenge for us We have said it before but it is important to be clear that children do not need a diagnosis in order to access our services. Assessment of need is a legislative requirement, but the more resources we target towards it, the less we have available to provide interventions for families, and that is what every family is looking for. The assessment is only the beginning of the process. Families really want intervention and support for their children. We are trying to strike a delicate balance. We are trying, with difficulty, to meet our legislative obligations but if we focus our resources exclusively on meeting our legislative obligations in respect of assessment of need, our clinicians will be doing nothing other than assessments. They will not be able to provide interventions for children. That is not because they are not willing to or do not have adequate funding to do it. Rather, it is because the pool of clinicians is not there. Our previous approach to assessment, where we were using the preliminary team assessment approach, got us to a point where our numbers of overdue assessments had come down significantly, but the High Court ruling last year has meant we have to go back to a process of providing full diagnostic assessments to meet our legislative obligations. Our number of overdue assessments has gone up significantly in the past year. At the end of December, our number of overdue assessments, without exceptional circumstances, was slightly more than 4,500. That figure had come way down at this time last year.

We are continuing to try to address the legislative piece. We are asking our teams to devote a certain amount of time to assessment. Equally, we are attempting to procure private assessments. The market is limited, so we are also looking at international procurement in order to try to secure huge numbers of private assessments. Our hands are tied behind our backs as regards the resources to do that.

Professor Malcolm MacLachlan:

Since Ms Justice Phelan's ruling in the High Court, in which it was found that the preliminary team assessment did not comply with the Disability Act 2005, we have undertaken a revision of the process and issued interim clinical guidance around it, which has received the support of legal opinion. We are waiting to meet the unions as we are obliged to do under the Workplace Relations Commission, WRC, regulations in order to be able to commence the new approach. The new approach is a tiered approached. It tries to tailor the assessment to the complexity of the presentation and ensure we do not have overly long presentations. As Ms O'Neill stated, we have found that when people have extremely lengthy presentations, is takes away from the time available for intervention.

Deputy Cairns used a powerful analogy when we were before the committee previously.

We said we had 91 disability teams and she said that if we fielded only half the players on a team for Ireland, we would not say that was a team. To be quite honest in our current circumstances as well as being under-resourced, as committee members know, the situation with the assessments of need takes the ball away from us because we have to direct resources to places that are required to fulfil legislative responsibilities, rather than the interventions we desperately want to provide.

Ms Caroline Canton:

On the family forums we have been actively helping the CHOs and CDNTs get their family forums up and running. We have had workshops for children disability network managers on how to get them moving. This Friday we will have an online session with facilitators. Each CHO is looking for an independent facilitator for the family forums. This is very important in order that it is balanced for families and they feel they can take part.

Some have certainly got going already and CHO 6 is well advanced. Almost all of its family forums have had their first meeting. There might be one or two still to go. Other CHOs have them in line. They certainly are all working on this and are aware it is very important. We really want to get the family forums up and running so that families have a chance to get together, ask their questions of the children's disability network managers and start the process of looking at co-design and their ideas of what would improve services. We need to involve parents. They are the ones who know what is needed.

Holly Cairns (Cork South West, Social Democrats)
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There are different ways to address a crisis and to perceive something as a crisis or a problem. There are hierarchies within the issues the State is dealing with. There is the idea that because we are now focusing on assessment we are losing out on intervention. Basically, there are not enough resources. We always hear it comes down to staffing, we cannot get the staff and we are looking at doing it abroad. If this were treated like a real crisis, for example Covid, there would probably be a way to address the issues. This is what I am trying to impress upon the HSE. From what the committee hears, it is beyond crisis point. People cannot get respite. They cannot get early intervention. I understand the issues with regard to assessments of need but if this were treated like an absolute crisis, would there be ways that we could speed up recruitment from abroad? I do not know what the precise issues are in this area. Can we do more? We need to do to more. How do we do this?

Mr. Bernard O'Regan:

This is understood by us to be an absolute priority. I have said it here, and at meetings of other committees, that we share the commitment that members of this committee and other committees have, which is that our children are the future of the State. What we do for children is critical. In this sense it has to be a priority that the gaps in services and supports that are there now are unacceptable and everything must be done to try to address them.

In the recruitment and retention work being done in the HSE at present, disability is one of the areas that is an absolute priority. It would not be wrong of me to say this. In some of the work we are doing we are trying to prioritise supports for our staffing recruitment for disability services and mental health services as the two priority areas. Part of this involves making it an attractive place to work. Ultimately where people have choices they will choose where they want to work. We want them to choose to come and work in disability services. We are doing a lot of work to try to portray it as positively as possible. This is challenging. Deputy Cairns knows that every time we put something positive in the public domain, someone comes back and says "Yes but". We try not to ignore the "Yes but" because it is the real experience of people but, on the other side, we want to try to make it as positive as possible in order to improve the recruitment.

From the perspective of the Department of Health and of the Department of Children, Equality, Disability, Integration and Youth as we move towards it, and from the perspective of the relevant Ministers, this is an absolute priority. They are definitely communicating this to us also. In this sense we are trying to come at it as focused as we can while recognising it is not any one thing that will fix it. We have to work at a few strands to get to the overall goal of improving recruitment.

The issue with regard to competing challenges is not entirely in our control. We are legally bound to meet the obligations of the Disability Act and we have to comply with the law. When we fail to do this we are subject to court actions, as Deputy Cairns knows. Trying to balance from out of the one pool of scarce resources the legal obligation on the assessments of need and the absolute necessity that interventions and services are at the core of what we should be doing is difficult. It is extraordinarily frustrating for families and there is no doubt about it.

Mr. Bernard O'Regan:

I thank the Deputy for his questions. I will answer a couple and then ask colleagues to respond on a few others. I will first address the analysis he identified as being needed as regards the effects of Covid on young people. Without wishing to appear parochial, that is probably something that falls within the mental side of the HSE.

Mr. Bernard O'Regan:

I will raise that with my colleague on the mental health side as an issue that has been raised, and we will come back to the committee with a response. As I do not know what work, if any, they are doing on that, I do not want to mislead the Deputy. I will come back on that. I will make a similar response to his point about counselling services being run on a voluntary basis and the value of mainstreaming them to build on their efficacy and the contribution they are making. I will also raise that with my colleague on the mental health side. That is also something that falls within their remit. I would not know enough but I will raise it and we will come back to the Deputy on it.

In terms of the vacancy rate and recruitment, as I said to Deputy Cairns, the vacancy rate is one of the huge challenges in the children's service. The point about how well they can work when they have the right staffing is well made by the Deputy. It is the case, and it is why we are working towards the policy implementation we are, because we believe it will have better outcomes for children and their families. However, the staffing level is hugely challenging. We are doing international and national recruitment. We are trying to increase the numbers of staff. It is not a money issue. We have funding for the posts. In other years I might have been here saying that we have to fight for funding. That is not the actual issue for us. The issue is trying to get enough suitably qualified people to meet the needs of children. We are trying to progress some work that is not reliant on a limited pool of staff. We are looking at things like therapy assistant grades or any of those supports, or additional administrative staff to free up clinical staff who might be spending too much time doing administration. We want to enhance our administration so we can release clinical staff to do therapies. We are progressing all of those measures but fundamentally, it comes down to the need to find the pool of people. That is not just for the vacancies we have now. We want to grow these services, and as our population grows we will need to grow these services. It is not just for now, we will need to be enhancing our recruitment capacity for the coming decade. I will ask Ms. O'Neill to comment on the assessment of CHO 9 and the schools.

Ms Angela O'Neill:

I will first add to Mr. O'Regan's comments on recruitment of staff. One of our huge issues is the recruitment pool of available staff. That is outside of our control but there is certainly a piece of work required with third level institutions around expanding the number of training places. That will not deliver next year or the year after. It will be a few years down the road. There also could not be an instant doubling of college places for speech and language therapists or for physical therapists. There is a requirement during those training courses to give clinical placements, which of course is an additional demand on existing staff. There needs to be a gradual increase in the number of college places available for the various disciplines needed in our CDNTs. That is outside of our control, but it is certainly something that needs to be done.

On the assessment piece, the Deputy specifically referenced CHO 9. That CHO has a very high level of applications for assessment of need. It obviously has a large population but the number of applications is very high. Over the past while, they have done phenomenal work providing those assessments of needs. Things have got better there; not cured by any means but things have got better. However, that is at a cost. Every reduction in the assessment of need waiting list happening in CHO 9 means less intervention being provided. That is difficult for families but it is also difficult for staff. It is very difficult to be constantly focused on assessment, particularly when it is assessment to meet the legislative piece, as opposed to what we would see as assessing children to decide what intervention is required next. It has a knock-on effect on our ability to retain staff. It is a vicious circle. We have said it in front of this committee before, probably like a broken record, but the Disability Act needs to be reviewed. Families want intervention. We want to give intervention and the continued focus on assessment and meeting our legislative obligations around that is not necessarily delivering for families.

Ms Angela O'Neill:

That comes back to the Deputy's piece around education, which I had forgotten. The drive for assessment often comes from the education sector because parents need the diagnosis to access the placement in the special school or in the autism spectrum disorder, ASD, unit or whatever. The Deputy mentioned SNAs. We have done substantial work over the past number of years, with our colleagues in the National Council for Special Education, on taking the focus away from needing the reports to get an SNA. You no longer, therefore, need the report from the CDNT to look for the SNA. There is the school inclusion model and they have changed their way of providing SNA resources or resource teaching. It takes the pressure off the requirement to have a report. The outstanding piece is the placement in the special class of the special school. We will continue to work with them on it. Deputy Cairns has asked how we fix the crisis. It is multifaceted and it is not all within the control of the HSE. We have to work with a range of stakeholders to make those changes.

Mr. Bernard O'Regan:

I will make two further points and then Professor MacLachlan wants to come in. I should have mentioned something further on recruitment. When we recruit staff from abroad, they do not meet the Irish regulatory requirements in terms of their qualification so they need a supervised placement to meet the criteria. Sometimes they also need some additional training. For example, a speech and language therapist in the UK can be registered to practice as a therapist in the UK without having training in feeding, eating, drinking and swallowing difficulties, FEDS, which is a regulatory requirement here. Consequently, they have to do that training. We are working with CORU to see if there is anything we can do to expedite the process with them. In addition, in the budget and service plan for this year, there is provision for a number of posts nationally. We can provide the number but from recollection, it is more than 40 staff who will be available to provide supervision to staff who need practice placements under supervision. We are trying to come at it from a few different perspectives to grow it.

Professor Malcolm MacLachlan:

I want to share one bit of good news with Deputy Ellis, which is in terms of staff training. Before Christmas the Higher Education Authority put out a call for either the development of new courses or the expansion of existing courses in the areas of medicine, nursing, pharmacy and veterinary. We anticipate that in April, it will be putting out the same call for courses in occupational therapy, OT, speech and language therapy, SLT, psychology and social work.

One thing that might be very useful from this committee's point of view would be if there was a strong emphasis on the need for that call to address the needs in disability from a community service development point of view.

Professor Malcolm MacLachlan:

Yes. If a person wants to be a physiotherapist, occupational therapist or whatever else, and he or she goes to college to do the training, etc., the training would be supported on the same basis as any other undergraduate course, but this would likely also have master's entry courses so that we could train an OT or an SLT, for instance, in two years, as is currently possible in Limerick. There are ways of doing it more quickly. The call that we expect to come out in April will be for the professions that are directly part of the CDNTs. It would be great to have an additional emphasis on the need to address those resources, in particular to disability.

Mr. Bernard O'Regan:

I should have mentioned a point that has come up previously in this and other committees. One of the challenges in the staffing of the children's disability network teams is that the staff are employed by different organisations and their terms and conditions vary depending on the type of organisation involved. A significant proportion of staff work in what we refer to as section 39 organisations. They are paid at lower rates than their colleagues who are employed by either the HSE or in a section 38 agency. That does not help. It has not meant that large numbers of staff have migrated from section 39 organisations to vacancies in section 38 organisations or the HSE because there are things that section 39 organisations have as part of their culture that also offer some appeal. In an environment where the cost of living is increasing, it becomes harder for people to be able to maintain that. Issues such as equal pay for equal work are a factor in terms of recruitment and retention as well.

Erin McGreehan (Fianna Fail)
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The witnesses are very welcome. It is great to have them with us. I will not delay with any pontification but go straight to questions.

In the context of recruitment Mr. O'Regan touched on many points I was thinking of asking about. Has the HSE undertaken research to see what are the blockages? Is it just that pool? If the HSE got any answers, have any changes been made to the posts to make them more attractive? In any industry, if a job is not being filled, we must look at it and see what changes could be made to the post or institutionally.

Has the HSE looked at the cost of reimbursing families for the cost of private therapies? I refer to cases where parents are told their child needs physiotherapy or occupational therapy and there is a two-year waiting list but the child could be seen privately.

On the website for children's disability services, the HSE specifically mentions the Triple P and Parents Plus parenting programmes. We had the organisations in before the committee earlier as an option for the group work. I was blown away by these organisations. It is clear the HSE has engaged with these organisations that have a proven approach, but there are no service level agreements or continuous engagement that make this kind of training a default and make it accessible to as many families as possible. Independently, they have seen the unmet need for families and through funding from RTÉ, the Community Foundation for Ireland, and other organisations they receive funding to deliver Parents Plus training with Family Carers Ireland. Those involved in Family Carers Ireland are putting their hands up because they need help. They are often the same families the HSE is engaging with.

Have the new assessment of need guidelines been issued to the teams? If not, why not? How many disability service cases is the HSE defending? Mr. O'Regan mentioned that some time ago. How much are the cases costing the service? I imagine the costs are substantial.

I heard recently that the Minister of State, Deputy Rabbitte, is establishing an independent review into safeguarding in CHO 1. Is the HSE going to engage with the process? Where is the HSE in regard to the independent review?

Mr. Bernard O'Regan:

We will share the questions if that is okay. I might take the children's service issues first and then come back to the question about safeguarding at the end.

In terms of the recruitment blockages, we have been trying to establish what the issues are. We are meeting the unions and they are consulting their members. We are also trying to share information. The types of issues that are being raised by staff - these are not necessarily in order - are pay and conditions, facilities and career structure. There is also a sense that if a person is on a team that has a low level of staffing and the team is under huge pressure from being unable to meet the need that is there, the stress of the job makes it harder to work and there is a risk that some members of the team will move. It gets worse instead of getting better. Those are some of the factors for staff.

We are working with our estates colleagues on a capital plan and investment to try to improve the physical environment where that is needed. We are building a new career structure. We have agreed that some of the posts that were funded will be used to create exclusively senior posts. In the first instance, there is a campaign to give the opportunity for promotion to those currently working in the teams and the residual posts will be advertised more openly. We are trying to learn and we will continue to do that. We have a forum of regular engagement with staff through the unions.

There are challenges with reimbursement to families. We are not able to do that. It has come up and we have looked at it ourselves to see if there is any means by which we could do it, but we just do not have the right legal landscape.

Erin McGreehan (Fianna Fail)
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It is a Department of Health policy.

Mr. Bernard O'Regan:

Yes. We would also have a bit of a concern around it in the sense that the more we invest in the private sector, the less the public services will grow. If I was a family, I would not care. I would take the service wherever I could get it. I understand that, but we want to try to grow the public services wherever we can.

I will ask Ms Canton to comment on the question about Triple P and then I will ask Ms O'Neill to comment on the AON question. I will come back to Senator McGreehan on safeguarding.

Ms Caroline Canton:

I agree. I am well aware of Triple P and Parents Plus. As the Senator heard this morning, these are excellent programmes. They are two of a very wide range of programmes that are appropriate for our families. The children coming to our teams have a great range of complex difficulties. They are also aged from birth to 18, so there are strong evidence-based programmes for parents and children that we want our teams to be able to deliver. That would be our approach.

A few months ago, I collected feedback from parents.

I collected it from the teams but it was feedback that they had got from parents on courses and programmes that they had attended. It was overwhelmingly positive and I was quite surprised by it. One parent said that a course was very helpful and useful. They said that before doing the course they would have done things so much differently and after doing the course everything they do has a reason and a goal. That feedback was from a parent who did a Hanen course.

I got more feedback from a parent who did a Sleep Tight programme, which is an evidence-based programme on getting children to sleep through the night. Anybody who has children knows that is fundamental. One participant said that all aspects of the course worked for them. They said the format, delivery, length and timing, diary and bedtime routine all worked. They said they could not recommend the course highly enough and that after 13 years of no sleep, the family were all finally sleeping thanks to the course. I could go on. There are transition to school groups, preparing for adulthood groups and gym groups for youngsters with physical disabilities. There is so much on which the teams are reaching out. I am so impressed because I have talked to a lot of people on the ground. Deputy Ellis mentioned how well the teams group are doing and the ingenuity of staff in the face of huge demand is very creditable.

Ms Angela O'Neill:

I refer to the AON legal cases. We get a huge number of legal cases and we defend very few of them because, in the main, it is quite straightforward. For example, if Joe Bloggs's AON is overdue, it is indefensible and the assessment just has to be provided. The cases we defend are the ones where there is a critical point of law on which we need clarification. I have said before that there are lots of areas of the Disability Act 2005 that are unclear and where it contradicts itself. Section 8(3) talks about an assessment of a child's education needs, and that is a case in point. We always interpreted that as saying that an adult would be referred for the section 8(3) assessment, while for children it was the relevant sections of the Education for Persons with Special Educational Needs Act 2004 that applied, and the latter had not been implemented. We had a Court of Appeal judgment last year that clarified that. It was not the answer we wanted but we had to defend that and go into court to get that judgment.

We defend few cases and we do so when we need clarification on something. They are expensive; there is no doubt about that. Resources are being used on legal fees that could be used in the health services in 1,001 other ways. The courts are no more satisfied with that than we are. I was in the High Court yesterday on that topic and we are working with our legal advisers to try to come up with a system whereby we can avoid children having to initiate judicial review proceedings and instead address concerns before they get to that stage, which minimises the costs.

Erin McGreehan (Fianna Fail)
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It is hard to implement it for legal clarity.

Ms Angela O'Neill:

Yes. It also then creates a difficulty where we end up prioritising children based on a court order. I have a fundamental problem with that. We do not have a choice but it means that the child for whom, in my view, it might be more clinically appropriate to be assessed, is moved down the list because the child with the court order has to be seen. As Mr. O'Regan said, the family does not care about that; it is their child who they are fighting for. We are trying to take the helicopter view and ensure we are providing the greatest good and the least harm for all the children for whom we have to deliver a service. I will hand over to Professor MacLachlan to speak about clinical guidance.

Professor Malcolm MacLachlan:

We have developed new interim clinical guidance. We have received supportive legal advice about what is being developed and it has been signed off by the clinical forum, which is the highest clinical decision-making body in the HSE. We are waiting on a meeting with the unions so we can go ahead and implement it. It is good to go but because of our obligations under the WRC we need to have that meeting first. I anticipate that it would be supportive of it but that is where we are with that.

I want to make another comment. Notwithstanding everything Mr. O'Regan said about employment in disability services, it is important to emphasise that the jobs are intrinsically attractive. People really want to do the jobs and they get a lot of personal satisfaction from them. It is not that the jobs are unattractive; it is the broader context and the narrative in which people are doing those jobs. I take on board the importance of the point Deputy Cairns made about recognising the crisis nature of our situation. However, nobody wants to work in a crisis and it is difficult to recruit people into sector that would be described as in crisis. We recognise the huge need to address this serious situation but if we want to get more people to come into disability services, we have to show that there are positive jobs and opportunities for people to do the work they want to do to deliver the therapy rather than only doing assessments. I reiterate what Ms O'Neill said. One of the key drivers for enabling us to do that will be a revision of the Disability Act 2005, which is long overdue, as we have said in this committee previously.

Mr. Bernard O'Regan:

I refer to the safeguarding question. The HSE has undertaken a significant number of reviews on safeguarding in services in CHO 1 and substantial work has been undertaken by the management and staff there to bring services to a standard that gives assurance to the people using them and their families that they are safe. On top of that, it gives them an assurance that they are good services that will support people in the direction they should go. The HSE will co-operate with anything that enhances safeguarding for people. I know what the Minister's intention is in this regard and the HSE will co-operate with that. It will show the substantial work that has been done. We can never be complacent about safeguarding and just because we know things are going well today does not mean there will not be a difficulty tomorrow. We have to keep monitoring, learning and building. We will co-operate with that.

Erin McGreehan (Fianna Fail)
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I want to follow up on one comment Professor MacLachlan made. He mentioned the pressure on the teams. We have massive caseloads. How is the HSE managing the risk from so many children being on the waiting list with such large caseloads? Where is the clinical and ethical guidance on all of that? It must be a huge burden and it is a societal burden because it involves the staff and the children.

Professor Malcolm MacLachlan:

There is a national prioritisation policy. Every child is quite rightly a priority for his or her parents but in some cases there is a breakdown in family relations, feeding, eating, drinking and swallowing, FEDS, problems or equipment breakdown with people who have assistive technology. There is a range of issues that should be prioritised because they represent an immediate and significant clinical risk. Then there are lots of other things we want to get to as quickly as possible but that is the way to manage the clinical risk. Unfortunately, diverting scarce resources to those who are more at risk means those people who are less at risk have to wait longer. Sometimes that means they can then become more at risk because of the enormous strain placed on them and their families as a result of waiting.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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My first question is on the presentation this morning on family-centred practice and the briefing document the committee received. The content of the document mirrors what members heard from Triple P and Parents Plus. From talking to parents, it appears that many of them are not getting that sort of support. I hear of the CDNTs offering online courses on different issues but I hear from parents that these courses are very general and not specific to their children.

Every child is different. There might be some issues that are common to a number of children and they could be done as a group. Working with families and identifying priorities for their child does not seem to be happening. Is that going to be expanded because it seems that it has a proven track record of working? Is that different from family forums?. Are they two different things? Those forums do not seem to have been established in many areas and parents are waiting because they want to have more say with the CDNTs.

On recruitment I want clarification on one issue. People who train for speech and language therapy in the UK are missing an aspect of training that is required for registration here. At a meeting last July the Minister of State at the Department of Health, Deputy Anne Rabbite, said it was no longer an issue, and that there would be on-the-job training. I cannot remember if it was at this committee or the autism committee because I am on both and there are overlaps. I know it was early July when she stated this but when I mentioned it at an Oireachtas health forum meeting with the HSE in CHO 1 they were not aware of it. They said it was very important and had already put in place training places to do the on-the-job training. Can I have clarification on whether that is actually happening?

There are still significant delays with registration with CORU and it is not adequately resourced. More disciplines have to register but they are not getting the increased staff. If we know that is causing a problem why have they not been properly resourced?

It was said here that assessment of need is not necessary to get services. I do not understand how one knows what services a child needs if they are not assessed. Even with the preliminary team assessment that was being carried out prior to the court ruling last March, parents whose children underwent that were still not getting services anyway. That was the biggest problem with that. It appears that they were either being put on a list for a more complex assessment or they were being put on a list for services but they were not getting it either. For example, children with Down's syndrome do not require an assessment of need. It is fairly obvious what the issue is and that they will need speech and language, occupational and physical therapy but they are not getting these services.

Regarding my own area of Cavan-Monaghan, I have a question about the CNDT team. I am told that the whole-time equivalent is 26.4 for Cavan and 26.3 for Monaghan and there are 10.6 and 10.14 vacancies, so very similar figures. When I talk to parents they are surprised at the 26 staff complement in Cavan because they can only count about 14 professionals. Are clerical administrative staff and cleaning staff included in this figure?

Ms Angela O'Neill:

Cleaning staff are not but the administrative staff and the manager are included.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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The parents feel that the figures do not add up. One assumes that the majority of staff on a CDNT will be from the different disciplines such as occupational or physical therapy. I would like clarification on that.

Mr. Bernard O'Regan:

Staffing in CORU is for the Department of Health to resource and I do not know what the staffing levels or the particular challenges are. I agree that when we ask any regulator to expand its scope there is a resourcing implication. There is ongoing work and important expansions to include psychology as part of the oversight in the future, which we welcome. If additional resources can be approved by the Department and they help to speed things up, that would be great. It also links back to the question around placements. The issue regarding staff from other jurisdictions being able to have those placements is that they have to be supervised while they are working. We have to have the capacity to be able to supervise those staff. We have a chicken and egg problem where we have a small pool of staff already on the team and we want staff to be able to go in on these clinical placements so they can build their capacity and do the on-the-job training under supervision they need to do. We need to have enough suitably qualified staff already on the team to be able to do the supervision. That is why the measure mentioned earlier, where we are approved to recruit some posts nationally to support those placements, will be critical to try to grow the programme. I do not think what the Minister of State said was not correct. It is that the capacity to actually support it is quite challenging regarding having suitably trained people. If I may give an example, at the moment we are trying to direct supports into special schools and work with those children. Many of the staff we are asking to do that are quite experienced because that is what is what is needed in order to do that work well. They are also the staff one might like to be doing the clinical supervisions. We are spreading things so thinly that we are giving with one hand and taking with the other. However, we are trying to increase the number of placement supervisors and best practice supports that we can put in place to address that. I will ask Ms Canton to comment on the family forums and the family centres practice.

Ms Caroline Canton:

Family forums are part of our governance structure for our CDNTs. We will have a family forum for each CDNT. Here, the families can meet together on a regular, if not very frequent basis. They have an opportunity to discuss matters and to hear from the CDNN and be told what is happening. They also have the opportunity to discuss their issues and what suggestions they may have to improve services, which is really important. For example, in CHO 4 there are 14 teams so there will be 14 family forums. For example, in CHO 4, each family forum will elect two or three family representatives. They will all meet as a family representative group and they will have two members on the governance group. They are actually sitting with the CEOs and the head of disability services, etc, on the governance for the children's disability network teams in that area. The family forums are very important to hear families' views, to get their ideas and to start to look at some co-design. Often the people using a service are the people who can best make suggestions on how to improve them, on governance etc. Some of the family forums have just started. In CHO 6 and CHO 7 they have mostly had their first meeting and in other areas they will very shortly have their first meetings.

Family centre practice is, as mentioned in the briefing, a change of philosophy in the way of providing services. It is an approach which changes from the traditional expert-led approach to actually looking at and hearing what is important for each individual family. Every family is different and every family has its own issues and culture. We need to really hear from them, reach out to them and find out what is important to them. I remember talking to a disability activist who told me that she had spent hours in her youth seeing an occupational therapist to learn how to tie her shoelaces. She said she was never going to be able to tie her shoelaces anyway and she did not need this help. That is an extreme example but what was important for her could have been something completely different that the occupational therapist could have focused on. It is a major culture change. Much of our training focuses on our staff being that expert and we need them to have that expertise and skills. Nobody is taking that away from them but they now have to pivot a bit away from that assess, treat, discharge, straight-line model to actually talk to the family and find out all aspects of the child's life.

This includes all kinds of spheres for the child, including at school or preschool, the use of transport, their housing, their equipment, their car and all kinds of issues. The team needs to hear about those and start to tackle one thing at a time. That is where the plan comes in. What will we start with? I gave the example of sleep. That would be typical. Let us get that first. Then the team undertakes to really support the child in managing that issue.

This is huge for families and for many - I would say most - staff. This is a big change for them and we are trying to give them whatever supports we can. We had a national team development programme which gave a couple of days on family-centred practice, first to children's disability network managers, CDNMs, and then to CDNT members. That was starting them off with the basics. We have guidance documents on how to approach an IFSP and I am revising that with a group of senior professionals to improve it and help teams to understand it.

We also need to provide far more communications for parents and families on what this means. Webinars and other things are ongoing. We had a plan for a small number of senior professionals to be seconded for a temporary period to work with our teams, coaching and mentoring them in family-centred practice and getting together a library of resources for families and teams. However, the lead agencies felt that, with the huge pressures members are hearing about in staffing teams, this was not the right moment to take any senior professionals away from the CDNTs, even though it was a relatively small number. That has been put on hold for now but we hope to get that. It is work in progress and we need to keep working at it.

Ms Angela O'Neill:

Assessment of need is my hobbyhorse. Assessment of need is a separate legislative process. The assessment is focused on determining whether the child or young person meets the definition of disability in the Act. It is around meeting what the Act requires us to do because when we do not tick all of the boxes in the Act, we end up with a court order telling us to do it again.

If I am a clinician working on a CDNT, I can work with a family very quickly to establish their immediate needs. In a five-minute conversation with a family, you can establish their priority is the kind of things Ms Canton spoke about, such as night sleep. The child will need speech and language therapy but right now, unless we address the sleeping, somebody will kill the child. We can assess the immediate needs and provide interventions very quickly without this big bells-and-whistles assessment to meet the legislative framework.

We are assessing all the time. Assessment is a dynamic process. When the assessment of need is done and legislative obligations are met, the speech and language therapist, social worker or whoever meets the family on a weekly, monthly or other basis is re-assessing the child and family’s needs all the time and deciding on the next steps. We need to separate meeting the legislative piece from doing what is right for families and supporting them in the right way. The Disability Act is making that difficult for us.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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In my area, CHO 5, accessing services is the biggest issue. I talk to people daily on early intervention. We spoke there about assessment of need but the question concerns how long someone waits to get that assessment. The reality is we have a broken system. I feel from talking to parents that they are burnt out. They are constantly trying to get information, which they cannot get. The child needs assessment as quickly as possible, which is not happening. People have started to feel nobody is listening to them. That is some of the parents I talk to.

What worries me more across the board is this. When I bring up, as I and other Oireachtas Members often do, assessment and what will happen, we get back: “We can’t recruit. There’s funding there and we’re going to recruit.” I am working with a disability service in Carlow. I will not say the name but have it here to give to the witnesses, and I know of another one. This service provides the best service for children with disabilities. I have been on the phone for two weeks trying to get its payments because unless it gets payment soon, it will not have money to pay staff. We have a service doing an excellent job. The HSE says it has not got the funding. Service providers tell me they hear nothing from the HSE. I have been in contact with the Department to see what is happening. The manager of that organisation, which provides a service for children, does not know if staff can be paid.

It is a section 39 organisation, for which €59 million was proposed in budget 2023. If we cannot look after the ones that are already organised and running, how will we recruit and set up others? There are huge issues. I could mention many of them and stay here for the day but I have to try to be polite because I am at burning point. How are we protecting the services we have? I am constantly listening to Ministers in different areas speaking of recruitment issues and saying funding is there. While I know that is important, my heart is broken.

I will give another example. Over the past two years, Covid has had a huge impact on families, particularly people and children with a disability. In the budget we were told of the provision of €100 million, comprising €65 million to the Minister of State, Deputy Rabbitte, and €35 million to the Minister of State, Deputy Butler. We are going back to service providers and telling them we have €65 million extra allocated in a one-off payment in the budget for those services but the services are crying out for money and we have no money.

An issue that struck me was when I met a group of lovely people talking about neurorehabilitation. They spoke about community rehabilitation and vital services for people living with a neurological condition. They said it helps support recovery and prevent disability but that only 15% of people have access to community rehabilitation. As I represent Carlow-Kilkenny, our CHO area includes Waterford, Wexford, Carlow, Kilkenny and south Tipperary. This issue has affected many people with a disability. As Deputies, we are saying that we will get the funding for organisations and it will happen, yet I am asking the witnesses, on behalf of CHO 5, to make sure we get funding for staff and services.

We had sight of the CAMHS interim report this week. Again, it is about funding. I do not know how we will fix our system. I am really worried.

While there are recruitment and staffing issues, I can tell the witnesses hand on heart that I do not see any funding across any board. I am at the stage where I am not even putting it down to that any more. Certainly, we must fund the services we have. We must recruit. We are losing the best people - we have a great third-level education system. We are a great country. When we do things, we can do them right but our disability services are far from what they should be. How will we be able to put the services for children and adults with disabilities in place? I could be here all day but I do not want to be negative. What are we going to do with communities and to provide services with funding they are not getting?

Mr. Bernard O'Regan:

I and my colleagues here and across the CHOs share the Deputy's frustration regarding a lot of the things she referred to. Eighty-five percent of the services that are provided in specialist disability services are provided by voluntary organisations. They are an essential and very valuable part of the service fabric. Many of those organisations were founded at times when the State was not providing any services and grew from being voluntary to where they are now. They face significant challenges, some more than others, in terms of funding.

Regarding the core budget, we have an allocation of about €2.5 billion for disability services for 2023. That is allocated to the CHOs and the organisations through their service agreement arrangements or in some instances, done on the basis of invoicing. There is a bit of variety there. We make that funding available to the CHOs for them to be able to allocate. When there are announcements such as the one in the budget around the pandemic payment for section 39 staff or the inflation fund, the Department agrees protocols, mechanisms, rules or criteria by which that funding is to be done. On the pandemic payment, eligible section 39 organisations got packs. They have completed their submissions. Where their documentation was completed in full, the payments are being processed. There are some organisations where the documentation is incomplete or has not been returned. As they are completed, they will be processed.

Regarding the once-off inflation fund, the Department has been in correspondence with the HSE before and since Christmas. Some details are being worked out relating to the process. I will come back with clarification but according to my most recent update, once a process is agreed with the Department, it will be looked at in early February - that payments will be released to organisations. That was a week ago. I do not know if everything was put in place for that kind of timeline to work but I will come back if there is any further clarity about it. It is in the HSE's interest that this funding is provided to those organisations because in some cases, we have to provide some funding on a cash acceleration basis-----

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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They are calling it emergency funding-----

Mr. Bernard O'Regan:

-----so they have enough money to pay their bills.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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I have been told that emergency funding is going to certain services but they are down to that. I know of a service that provides an excellent service has sent in all its paperwork. I have gone to the Department and CHO 5. I am not blaming CHO 5 because I know it is doing its best. I think there might be a small bit of emergency funding but it is unacceptable to have a service waiting and not knowing whether its staff are going to be paid in two weeks' time. Can somebody help? Can the HSE step in and sort those issues out? These issues should not arise. It is not down to paperwork because everybody is used to that now. I do not buy that argument anymore. I am not saying it is the HSE's fault. I am not here to blame anyone. I am just here to ask Mr. O'Regan about services that need to be paid, particularly those section 39 organisations that are under pressure for funding. These organisations must be paid. I am really worried about all this.

Mr. Bernard O'Regan:

If the Deputy has a particular organisation in mind, I am happy to discuss that with her. We engage with a lot of organisations. We fund over 400 organisations on the disability side of the HSE. Issues relating to funding are very varied and can be quite complex. Some of them are easier to resolve than others and some need more explaining than some of the explanations provided to us so we need to work constantly to address that and we will do so.

It is important to say there is a core issue. The Department published the disability capacity review last year and it indicated that significant further investment in disability services is needed over the next decade or so. One of the drivers, albeit not the only one, of additional costs for service providers, both HSE and voluntary, is emergency need and responding to critical need - sometimes without a budget being available. This then leads to cost drivers for the organisation needing to be supplemented. That is very challenging because we cannot have a situation where everybody operates on the basis of the blank cheque and the ten-year investment programme we need has been spent before we even have it. We are trying to find the right balance in this regard. Ultimately, the State will have difficult decisions to make regarding whether it invests in this or that. There are pros and cons whichever way we go.

We have a programme led by a colleague that focuses on the stability and sustainability of organisations. It is working with a number of organisations. The goal of that work is for us to ultimately have a stable and sustainable service delivery system in Ireland that is properly resourced and organised and has the kind of reform that will be needed by the voluntary organisations. It is not just about money.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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I know that.

Professor Malcolm MacLachlan:

I will respond to the Deputy's concern that nobody is listening. This really concerns me because as Ms Canton has explained, a lot of work has been done establishing family forums that were explicitly established to hear the service user's voice. I spoke recently to a CDNT manager who had been to the first family forum, which was a very tough meeting for her because there was a lot of criticism. She told me that when she went into work the next morning, she had a load of emails and texts from people saying they were very satisfied with the service they were receiving but did not feel they could speak up at that meeting because a lot of people were hurting a lot because they were not getting that service. That forum is there to share with the families the challenges of the service and to give them an input into helping us prioritise where resources should go.

I will revisit a comment made by Deputy Tully. I think she suggested that if we know that someone has Down's syndrome, we know what he or she needs. I am sorry to say that this is definitely not the case.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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It is a diagnosis.

Professor Malcolm MacLachlan:

That in itself does not tell us anything about what he or she needs.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Professor MacLachlan is making the claim that children do not need assessment of need but just need services. How you could decide what service they need without an assessment?

Professor Malcolm MacLachlan:

Sure.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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We know people need a diagnosis to get into special school settings, which is causing significant problems. With Down's syndrome, they do not need a diagnosis. You know roughly what children would probably need but every child is different and would have to be assessed.

Professor Malcolm MacLachlan:

With Down's syndrome, the diagnosis is easy because the condition has a genetic cause but the way in which it expresses itself changes hugely across different people. That is really the essence of a family-centred approach. We find out what is required by that individual. Of course there is an element of assessment.

That is normal good clinical practice, but it is distinct from the legal requirement for an assessment of need. We always conduct assessments as part of routine clinical practice to work out what is in the best interests of the person and the family. We cannot just go by a diagnosis even when we have one, given that it does not tell us what the individual and the family need.

Michael Moynihan (Cork North West, Fianna Fail)
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I believe Deputy Tully's point was about getting to the base of what the child needs and not tying it up in red tape. Am I correct in that, Deputy?

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Yes.

Michael Moynihan (Cork North West, Fianna Fail)
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From my experience down the years, this process is tied up in red tape.

I apologise, as I was not present for the presentations in full, but there seem to be two issues. In every other area, people go to the private sector first and then want to go to the public sector for permanency of employment and so forth. For example, someone starting off as an agricultural adviser joins a private practice but ultimately ends up in the Department. In my experience, people in the disability sector start in the HSE before leaving it for private practice. This indicates there is an issue.

The money was allocated on 24 or 25 September - I am not sure what the date of the emergency budget was, but it was at some point between 20 and 29 September - and it took six months to work through the system. Everyone knows the challenges, be it the organisation in question a section 38 or 39 body or something else. If the Department of Health and the HSE are on top of the challenges fully, what is this bureaucratic checking about? That some information had not been returned yet was mentioned.

There is a deficit in how the services are being provided. We politicians who sit on this committee every Thursday know families that are dependent on the public sector for services, but those services are non-existent. They are simply not there. Families get one, two or three sessions, but there are no services beyond that. Families then start looking to go private.

I take the point about rolling out a service and the underfunding of the HSE. Other equally complex Departments received funding through the emergency budget process that had to be spent by the end of the year. It was spent and sent out to organisations. If they received money on 1 February, then as sure as night follows day, it would be spent by the middle of February. Urgency is needed to ensure that every available penny is allocated to organisations so that they can recruit and keep staff and try to improve the public services that are provided to all people with disabilities. There are challenges and stoppages, but when looking at the evidence we are shown, I sometimes cannot even figure out where they are. Taking six months to allocate money does not bode well.

Recruiting and keeping good people so as to ensure disability services are available will be the public sector's greatest challenge. The vast majority of families of people with disabilities cannot afford the private sector. The witnesses should keep that in mind.

No more than is the case with Down's syndrome, too much emphasis is being placed on deciding this is not that and that is not this. The point being made is that there is too much red tape. Whether it is the witnesses, advocacy groups, the Government or this committee that blow through the red tape and identify what challenges need to be addressed, we must do so collectively.

I thank the witnesses and members for attending and I thank our team for their work. No doubt, we will be speaking to the witnesses again shortly.