Progressing Disability Services for Children and Young People: Statements

I welcome the Minister of State, Deputy Rabbitte, to the House to discuss the progressing disability services for children and young people programme and assessments of needs.

I thank the Senators for their invitation to discuss one of the most fundamental reforms in the health services in recent memory, which is the implementation of the progressing disability services for children and young people, PDS, programme. It would be disingenuous of me not to acknowledge that the HSE has had considerable challenges in implementing the PDS programme in parts of the country. We would only be codding ourselves to say otherwise. It is important as well to say that I am here as the Minister of State with responsibility for disability in the Department of Health and that I am not a spokesperson for the HSE.

It is sometimes hard to defend the indefensible. Unfortunately, the challenges faced in some parts of the country have resulted in delays for families in accessing much-needed therapies for their children. I express my sincere apologies to any family experiencing such delays, and I am sure the HSE does as well. Historically, children's disability services have been provided by a range of statutory and non-statutory service providers that delivered services based on a child's diagnosis or age. The type and level of service provided varied widely throughout the country, with some children receiving an excellent service while others got little or none. This variance may have been linked to diagnosis, age group or geography.

The PDS programme, on the other hand, sees the reconfiguration of children's disability services across all statutory and non-statutory organisations into children's disability network teams, CDNTs. These teams aim to provide equitable child and family-centred services based on the child's needs rather than diagnosis or where the child lives or goes to school. As part of the PDS programme, children's disability services are changing from being based on diagnosis to being based on needs, so that all children with a disability or developmental delay have access to the right service based on their needs no matter where they live or go to school. Our clear objective is to end the unacceptable inequitable access to therapeutic supports children with complex functional needs rely on to achieve their potential.

The national policy on access to services for children and young people with disability and developmental delay provides a single point of entry, signposting parents and other referrers to the most appropriate service. Senators may not be aware, for example, that the HSE primary care services provide supports for children with non-complex functional difficulties, while children's disability network teams, under the remit of HSE disability services, provide for children with complex functional difficulties.

Under the PDS programme, children's disability services are delivered for those aged 18 and younger through these children's disability network teams. This means we no longer have the inexcusable situation whereby a child ages out of early years services without ever having being seen by an early intervention team, only then to go to the bottom of another waiting list to be seen by a school age team. A total of 91 children's disability networks are aligning to 96 community healthcare networks. On full reconfiguration, every child with complex needs arising from his or her disability will have access to a children's disability network team.

The Senators can see from the document I have provided that community healthcare organisation, CHO, 1 has seven such teams and the reconfiguration there took place in September 2021. In CHO 2, there are six CDNTs and that reconfiguration happened in October 2021. Mayo will have three CDNTs, with the last to be established in December of this year. A total of seven CDNTs are in place in CHO 3 and 14 in CHO 4, which covers the Cork-Kerry area. We have huge issues in the Cork-Kerry area, as some Senators may be aware. The reconfiguration there took place long before the situation we find ourselves in now, with many more teams coming into place. CHO 5 has 12 CDNTs and they have been in place since September 2021, while CHO 6 has had its seven CDNTs in place since 13 September 2021 and CHO 7 has had its 11 reconfigured CDNTs in place since 20 September 2021. In CHO 8, four CDNTs have come on board since 25 October and the last eight CDNTs will come on stream from November 2021. The 12 CDNTs in CHO 9 have been in place since September 2021.

It is important to recognise the mass reconfiguration that is taking place. Leaving aside CHO 3 and CHO 4, we can see the flurry of work occurring throughout the country with this reconfiguration. It is important as well to contextualise what reconfiguration means. It means we are upsetting our apple cart completely. We have lead agencies, which could be Enable Ireland or the Brothers of Charity, working with HSE providers. They are all coming together to form teams. Some people might never have worked as part of these teams before. It is also important to say that many of the HSE teams, believe it or not, were working off paper records and were handing over paper files to some of the lead teams. Looking at what we are handing over and what we are trying to pull together, therefore, it is vast and complex. In addition, we never had real figures concerning this area until the true numbers started coming through now to the CDNTs.

Enable Ireland, for example, is doing phenomenal work in CHO 4. Talking to the CEO of the organisation one day, I asked about the number of cases the teams would be dealing with. The figure the HSE had provided for one team was 872 cases, but the actual number increased to a total caseload of 1,800 for that team.

It is important to put it in that context so people will understand that when we talk about reconfiguration; it is not just about taking from one side of the table and giving to the other. It is more vast. We are moving staff around the place and expecting staff who have never met before to start working together for the first time. We must also think of the families and children not getting letters, not knowing what is going on and the lack of information. The process is in a state of flux but, for the first time, I can give dates and timelines for the reconfiguration. I do not have a figure for each of the 91 teams, but I have outlined my objective.

The teams comprise a range of health service practitioners. I have addressed that. The services include universal, targeted and specialist supports, such as individual therapeutic intervention and access to specialist consultation and assessment when needed. Supports will be provided when feasible in the child’s natural environments – the home, school and community. What cannot be disputed is the unprecedented level of additional resources that have gone into strengthening therapy services. Since 2019, 285 therapists have been added to the teams. At the same time, however, we are still short approximately 400 staff. The staff in this labour market are predominantly women, and at all times our staff level seems to be down by 40%, for various reasons.

I am pleased to inform Senators that further investment is planned for 2022. I will announce it in my HSE service plan. There will be more staff. I am glad to tell the House that I am going to ensure that there will be, for the first time ever, administrative staff because therapists are doing secretarial work. There are therapists writing the reports and writing to the parents. We want them delivering the services. They need to be supported by administrative staff. When we get to that stage of balance, we will have a functioning service. I do not believe we have one at this moment.

On assessments of needs and the assumption of ministerial responsibility, Senators will have heard me talk about the matter more than once. I am not going to rehash it, but it was good news that we cleared a backlog down to 500. That was a story there and then but it is not the story now. The story now, I must be honest with the House, is that I am disappointed to learn that, despite the phenomenal work of the HSE in recent weeks on clearing the backlog in the middle of the pandemic, the latest quarterly data from the HSE on needs assessments show how it has backtracked on its own progress. The total number of children awaiting an assessment of needs, including those who make up the backlog, amounts to just under 4,000.

We have spent a lot of time at committee meetings discussing how the SOP was supposed to work. I was always led to believe that the backlog concerning the assessment of needs was under the old regime, whereby it could have taken up to 20 or 30 hours to get an assessment done. Then there was to be the SOP, which was to be a direct intervention. We should never have been in a state in September, October and November of this year in which there was a backlog. I am very disappointed about it. As I stated, I am not here to defend the HSE but to be very honest, open and transparent. In being so, I have one for everyone in the audience in respect of the latest third quarter management report concerning the assessment-of-needs process. It is important that the House familiarise itself with this. I cannot in my ten minutes address the issues associated with why I am so disappointed that we have built up a backlog. I have seen the letters that have been circulated and I have noted how disappointed Senators and, most important, the parents have been. When Senators read the report, they will see how the parents are not getting responded to when they say they are not getting a service and that they are not getting a date or time. The report states this clearly. I look forward to contributing later.

I thank the Minister of State very much for her honest and refreshing approach in her statement. It is refreshing to see someone of her calibre come to the House to share that information with us.

The Minister of State is very welcome to the House. It is always good to have her here to discuss the progression of the disability services programme and the assessment of needs. I welcome her robust and honest opening statement. Robustness and honesty from a Minister are always welcome. We in Fianna Fáil very much welcome this debate. We have always been advocates for people with disabilities, and we have worked to assist and worked towards a rights-based model. I am glad the Minister of State is at the helm. When she was speaking, it crossed my mind that there is a lack of movement from the Department of Health. Could she give us an update on that? That would be welcome.

It is excellent to have a champion like the Minister of State fighting for the rights of people with disabilities. No one in the Oireachtas knows the challenges associated with meeting the needs of children with disabilities better than her. She is acutely aware of the delays and discrepancies and their impact on children and their families. Her constant availability and openness to meeting families and representatives of disability organisations are always welcome and appreciated.

The PDS is a significant programme of reform, which we hope will change the way we deliver services and supports for children with complex needs. As we all know, children’s disability services have developed in an ad hoc manner. While some children have received an excellent service, others have received none.

The Minister of State highlighted that the provision of services is currently incredibly inequitable and varies depending on a child’s disability and age, in addition to where he or she goes to school and lives. This inequity is deplorable. What was in place was not working. We must now examine critically and constructively the proposed system and make sure it is flexible and will work. We must ensure there are review mechanisms as we move forward with the programme because we cannot expect one strategy to fit all. Arrangements may need to be amended, and flexibility will need to be written into the system to ensure it works for each community health organisation, CHO. As we know needs differ from one CHO to the next. We need a streamlining of attitudes across all boards.

Last year, the Government provided nearly €8 million to address the backlog affecting assessments of need. I am incredibly disappointed to hear there has been such a dramatic increase in the backlog given all the excellent work during a pandemic. How did the HSE allow the assessment-of-needs backlog to build back up after the huge investment? Is the SOP not working? As I said, a constant review of all our actions needs to be taken.

There is a relationship between the intervention and the assessment of need. As rightly highlighted, this needs to be far more cohesive. Historically, there has been a difficulty because we have no standard way of performing assessments. A clinician in one part of Ireland may carry out an assessment in an entirely different way from a clinician in another part. This has led to the possibility of clinicians being very conservative and spending a great deal of time doing assessments. As the Minister of State said, the PDS is an integral part of Sláintecare. Could we have an update on the Sláintecare reforms from her point of view? I am aware that these are a key priority for her and the Government. We must be positive about this. We must be constructive and look to the future to determine how we can move towards the social model and away from the medical model. The children are not sick; they just need therapy and to have their needs met. Therefore, it is progressive that we are moving away from the Department of Health. The children are not sick; they need help and therapy to be their best selves.

I am contacted regularly on the issue of waiting lists. I will not elaborate on it because my time is running out. I have a few more questions I would like to ask. Has the HSE drafted a clinical baseline for each team to ensure it is not oversubscribed? Has the HSE provided to the Minister of State a breakdown of the number of children assigned to each team? What clinical oversight mechanisms does the executive have in place to ensure teams are not burned out?

Has the HSE considered any alternative measures, such as the use of technology, to tackle those terrible waiting lists? At a meeting of the Joint Committee on Disability Matters this year, Dr. Cathal Morgan, head of operations, disability services, said:

There is an old phrase: "Culture eats strategy for breakfast." We can pour in all the resources we want, but if there is not a fundamental change in how clinicians work, there are no standardised norms in how we perform interventions and our system is one of assessments only, then we create a waiting list for assessment and then another for intervention. That has to stop. We must move to a scenario where children are on an intervention pathway from the get-go.

How is that culture, that eats strategy for breakfast, changing?

I thank the Minister of State for her statement today and her continued work and commitment. She is extraordinarily dedicated and shows a determination and will since taking up office that is to be lauded and praised, and I sincerely mean that. Her office is super: if I contact her officials, I get an immediate response. There is a sense that work is getting done and that they are listening, which is really impressive. I thank her for that.

The Progressing Disability Services for Children and Young People programme is great in the services it will provide. The way it will do so in an equitable and consistent manner is fantastic. However, in the here and now, there is nothing but inequality and inconsistency. I see incredible political will. I saw it previously with my party colleagues when they were leading the Government. I see it in our shared three-party Government. We have committed eye-watering budgets to this, yet there continues to be a problem.

As I have raised with the Minister of State before, one of the first representations I had was that of a mother with a newborn child with Down's syndrome. She was in a scenario in which with each application she made, she had to prove that her child needed them. I do not understand why we have not put a pack together that outlines what is in store for parents. It should be cross-departmental in its provision of information. It should ensure the supports available to them and the realities are reflected in it, and that it is made easy for them. Children might be assessed but will they receive the services identified through that assessment? If they live in Dublin 12, they certainly will not. At present, in that entire Dublin postcode area, no child is receiving that service. I have raised this matter with the Minister of State before. There is a postcode lottery as to who, when and what services they receive.

I get emails from parents who cannot understand why early intervention windows are missed or that someone has the gall to send them a letter that states they are on a waiting list for an occupational therapist, whose services they will receive in 2024 when their child needs it now. Families have received letters for appointments that were due to take place this month, that have now been postponed for a whole year. Families are resorting to accessing services privately. The problem with that is that it is a question of whether a person can afford them or not. In the lottery of life, depending on what family one is born into and whether it can afford it or not, a person will be set on the right course and be given the right opportunities to live his or her best life or not. That is not okay. There are situations in which the provision of resources allocated to twins is as though they are one person instead of two people. These are individual citizens deserving of the rights of our State. Parents who were assessed in January this year and require further assessments have been informed that they have been moved on to the progressive disability programme and they will have a 36-month long waiting list.

I acknowledge that the Minister of State is not an apologist for the HSE. I am venting many of the issues I have already put to her in emails and have spoken about with members of her office. Parents are tired of advocating for their children and are worn out having to repeatedly fight. If my child were involved, I would be chained to the gates of Leinster House. It is appalling that people are sent to that level of distress when they are already worried about the forward planning for their child. They hear of situations such as that in Donegal and wonder what will happen when they are no longer here. Senator McGreehan referred to the disability matters committee. I come into this House every Thursday each week and share what I have heard in that committee and the lived experience of people. The testimony is that of paternalistic provisions, infantilising in our approach, the othering of people and ableist in our presumptions. People do not come before the committee as storytellers. They are there to say that they are here and they have rights, that they want to influence policy and decisions, and that they should be at the centre of decision making.

Last week, one of the witnesses who came before the committee was an autistic woman with autistic children. She spoke about cognitive behavioural therapy the objective of which is to mask the autism. She used the term "eugenics". I never thought I would hear that spoken about in this Oireachtas, something about which we should never hear in this State, since its foundation. There is a feeling of the othering of people or not being a citizen or being entitled, and being someone who we benevolently care for which, when in fact we should centre our whole State and all our decisions around how we ensure everyone has a right of access, that homes are designed so that people can not only visit but can also stay over. We know of people who have been unable to do that. The Minister responsible for disability should not be a Minister of State but a full Cabinet Minister, such is the value of the statement we need to make. We must give the Minister of State the autonomy to make all the decisions and command the power and budget that she deserves to bring home the determination and will that she has set out. That is the direction in which we need to go.

We must deal with sections 38 and 39. There is a bleeding of staff from one service to the other. If we rely on section 38 providers, we must ensure staff are retained. I thank the Chair for indulging me.

We are all aware of the situation the Minister of State was handed when she took office. I congratulate the Minister of State on her great work since then. There are many broken issues and she has dealt with them with great stealth and passion, for which I thank her. The Progressing Disability Services for Children and Young People is a national programme which is changing the way services are provided, which is a positive outcome.

As I am from Clare, I wish to highlight the figures released in February which state that 524 children across the community healthcare organisation, CHO, 3 region that covers Clare, Limerick and north Tipperary, are overdue an assessment of their needs. This included and was not limited to those on the autism spectrum and those awaiting assessments. On a personal level, I have seen first-hand what happens when people get early intervention and the difference it can make. I am sure the Minister of State is aware of that. I support her and offer my assistance in any way I can.

It seems every individual parent has to fight for services and rights for their children. It is as though each individual kid becomes a whole new problem, as if there has never been a child with this issue before, and that is not fair on parents. It is challenging enough to be parent, but it is even more so to be the parent of a child with special needs. There is something wrong with parents having to launch a huge campaign for each individual child. I am not saying this is the Minister of State's fault. Sometimes people become numbers on computers. They are not numbers on computers; they are our children and our future, and we need to support the parents and services in any way we can. It should not be left to fundraising for the different services needed. The State has access to money and there should be no issues in regard to services. What is the Minister of State doing to progress this very challenging issue?

I thank the Minister of State for providing a copy of her statement. It is great to hear her positive outlook for this programme. I am hopeful there will be a positive future with high-quality, timely, much-needed services for the sector.

I was distressed to hear the recent contribution from Senator Seery Kearney regarding the discussion at the Oireachtas disability committee when it was recounted that neurotypical persons were advised to mask symptoms of autism when in public. I thank the Senator for sharing that story in this House this week and last week.

It is important that we know what is really happening in the lives of people with disabilities. If we in this House cannot share the direct experience of disability the least we can do is amplify the voices of those who do and share their stories. I commend Senator Seery Kearney for doing so. I hope that in the House we can bring much-needed attention to persons living with visible and hidden disabilities.

I also want to raise specific points from an organisation that represents those who will be affected by this national programme. Down Syndrome Ireland will have listened intently to what the Minister of State said in her opening statement and to what she will say in answer to some of the questions people have. Down Syndrome Ireland has highlighted to me the concerns and experiences of its members with regard to accessing care. Progressing disability services for children and young people is a national programme, the objectives of which are to address inequity in therapeutic and multidisciplinary services, to have a national unified approach, to have a clear referral pathway and to have integrated care. All of these are incredibly important. As other people have highlighted, they have been sorely lacking until now in many areas. Down Syndrome Ireland told me this is an admirable goal but, as we know, the reality is very different. Families are reporting a complete breakdown in services with many receiving no therapy, sometimes for years at a time. A survey by Down Syndrome Ireland of families prior to the pandemic showed that almost half of families with a child with Down's syndrome were offered no therapy in the previous year. Those offered therapy averaged just five sessions, which is well below the level needed for best practice.

There are concerns about the communication on changes in the reconfiguration of services, with only 13% of families in the survey happy with the level of communication on reconfiguration. A total of 95% of those who responded to the survey were either unsure about how their service would be affected or believed they would receive a poorer service, with only 5% anticipating an improvement. This is not to be a Debbie Downer. It is really worrying that the Minister of State is here today speaking about what I believe will be a very positive change but service users are very concerned about it. They feel the progress and opportunities are not clear with regard to how it will work. I wanted to give the Minister of State this figure because I believe it is important.

Down Syndrome Ireland also states that whatever way services are configured and communicated there is no denying there are just not enough therapy posts to allow meaningful levels of therapy for every child who needs it. Families spoke to Down Syndrome Ireland about their frustration with inconsistencies in the service, staff turnover, short blocks of therapy with very long breaks in between and therapists being absent, on long-term leave or redeployed. These factors, along with some concerns about communication, could be potential major stumbling blocks to accessing therapy for their children. I wanted to share these concerns from this particular organisation. I am sure these concerns might be echoed in a number of organisations.

In recent years, the most quoted line from the founding document of the Republic, the Proclamation, has been that on "cherishing all the children of the nation equally". It has become the mantra of many a campaign and movement in Ireland and it is as relevant today as it was in 1916. In part, this is because the same sense of fairness that informed the writers of the document still inform Irish sensibilities today. Rather tragically, the same reality is true today as it was back then, which is that we are not all cherished, assisted and supported equally in Ireland. We need only look at the rates of unemployment and attendance rates at further and higher education of people living with disabilities, and the indignity visited on some who have to calculate what opportunities they can pursue against the risk of how many State supports they would lose if they did so, to see things are still very unfair and unequal.

To go back to the matter at hand, the programme is about service delivery. As stated, the programme seeks to ensure that services should be based on a child's needs rather than diagnosis and the services available where they live. These are incredibly laudable and important aims. I am a member of the Oireachtas Joint Committee on Health and a reproductive rights activist. We hear time and again from those seeking mental health, reproductive health and disability services that the two greatest barriers are diagnosis and geography. Diagnosis is particularly important because people are spending, as has been highlighted, inordinate amounts of money going privately. We know what therapies will help them. We know what the children need. We just need to get it to them.

I hope that progressing disability services for children and young people marks a turning point in access to services geographically and financially. We have all heard the stories from friends, family, local people and colleagues about the battles that have to be fought to get services. This is incredibly laudable and worthwhile and I wish the Minister of State the very best in getting the reconfiguration to where it needs to be. We need to be realistic with regard to the amount of work that needs to be done. I have highlighted the experiences of Down Syndrome Ireland. It is not alone. The jump from what is to what I hope will be is enormous. I wish the Minister of State well with the task. Many questions have already been asked, including on burnout, employment numbers and section 39 organisations. People are exiting the sector at rapid rates. How will the Minister of State marry this with what is an ambitious aim? I wish her the very best with the reconfiguration.

I warmly welcome the Minister of State to the House. I thank her for all the work she is doing in this area. I am very aware she works extremely hard and no better woman for the job. I agree with my colleague, Senator Seery Kearney, that there should be a full Cabinet Minister with responsibility for disabilities.

As we work towards a national reframing of services for disabled young people and those requiring specific educational support through the progressing disabilities services programme, it is vital that we are ambitious and keep the principles of dignity and equality laid out in the UN Convention on the Rights of Persons with Disabilities at the forefront of all we do. The progressing disabilities services programme offers an opportunity to create a level playing field for all families in Ireland no matter what their background or where they live. We must guard against confusing equality of access to services for a one-size-fits-all approach as was sometimes done in the past. The new national programme must be person centred and solidly grounded in an understanding of support services as a right that enables all young people to flourish, reach their full potential and participate equally in our shared future. Long-term planning and multiannual funding will be needed to make sure services throughout the country have the expertise and resources they need to make sure appropriate support is available to all who need it in a timely manner and to put an end to families having to battle constantly for scraps of support that barely cover the basics.

Trust was shaken by the "RTÉ Investigates" revelations last year about the Department of Health compiling information on families forced to take cases to receive the support they needed. We need to rebuild this trust with a real commitment to transparency and fairness and an end to the under-resourcing that treats families in need of support as adversaries. As well as long-term financial commitment, it is vital that we make a commitment to transitioning the services and supports away from an outdated medical model view of disability towards a rights-based approach which puts families at the centre of decisions about their lives. To do this, the voices of disabled young people need to be more clearly listened to in all stages of planning and delivery. Disabled young people and their families must be consulted about how these changes impact their lives. We must create a system that is responsive to their needs. We must move away from harmful practices that seek to isolate or impose conformity on disabled children and instead support their diversity and ensure they have the tools they need to build towards the lives they choose for themselves.

Our national disability framework action plan guarantees that access to services will be based on need and not on diagnosis. This is an approach I warmly welcome. I hope to see it expanded in the years to come. However, all too often the insight of families on what supports their children require goes unheard. They must rely on diagnosis to make their needs heard. This is particularly the case as young people progress in education or as they make the transition out of secondary school. The revised assessment of need standard operating protocol must include access to correct diagnosis for those who want one. This will not only guard against a future of unmet needs but will allow young people to understand themselves better as they grow. We must also address the regulatory and structural barriers that remain to ensure neither disabled people nor their carers risk poverty as we move forward together.

I urge the State to ratify as soon as possible the optional protocol of the UN Convention on the Rights of Persons with Disabilities to show that the time of empty promises is past and that Ireland is committed to vindicating the rights of its disabled citizens and to creating a more equal society that values all of its people.

We must not forget that long-term mental ill health is disabling and that these past years with the pressures of Covid, and I know this from the work I have done on the Joint Sub-committee on Mental Health, have presented new challenges which will require new answers. I look forward to a renewed commitment towards ensuring mental health support services are available to all who need them as part of the progressing disabilities services programme. A lot of work has been done in tackling the stigma surrounding an important part of all our health. As we move more strongly towards a framework that treats people in crisis and their families with dignity and respect, it is important we embed appropriate mental health support for young people throughout the country as an essential foundation for their futures.

I reiterate what all of my colleagues have said and wish the Minister of State well going forward in this particular job. I know how difficult her job must be and I thank her.

I thank the Minister of State for coming to the House. I thought her speech was very honest and informative.

I wish to convey some positive news about the way we treat people with disabilities. There are 12,700 people with autism and learning disabilities in the education system and €9.2 billion was put into education funding in budget 2022 with additional special education assistants and teachers.

Obviously there are a lot more obstacles for pupils and teachers when it comes to deciding who goes into these special classes and gets special needs assistance, so there has to be a framework. I do not think these services should be part of the Department of Health but done in conjunction with the Department of Education because they are too important. In general, taking children out of school or crèche environments to go to therapies is a waste of time and eats into their educational needs.

I thank the Government colleagues of the Minister of State, namely, the Minister for Education, Deputy Foley, and the Minister of State at the Department of Education, Deputy Madigan, for supporting the creation of Our Lady of Hope School, on which I and Senator Seery Kearney worked.

There is some hope in terms of the Government listening to parents, and that should be noted. Unfortunately, however, and I have raised this many times, there is a major issue with therapies and that is where we are at today. The Minister of State hit the nail on the head. The issue is recruitment and retention. We are short 400 staff and 40% of the current staff are out sick.

Is an assessment of needs approach the way forward? Ultimately, parents just want therapy. They do not want to wait three years for an assessment of needs but want their child to start occupational therapy, speech and language therapy, physiotherapy or psychology services immediately. We need a discussion. Are we wasting time getting a complex assessment of needs report or should we just jump into providing therapies for children? Parents want their children to receive therapies and parents want to learn early doors how to support their children in a home environment.

As many Senators have pointed out in the debate, parents who can afford to pay for therapies must pay €60 for 30 minutes and sometimes they must pay that sum twice a week for some children, which is a huge amount of money. It is so unfair because the children whose parents cannot afford to pay for therapies are not getting the early intervention while those who can are. They are doing it by borrowing from family members and taking out loans. Some parents have the opportunity to do this while others simply do not, rely on the State and have been very let down by it. We hear all the time that early intervention is key. Imagine the guilt of a parent who just cannot get that early intervention for his or her child. Senator Seery Kearney said that some people have a mask, so to speak, and drop the mask on certain occasions. The State is not giving our children these therapies just so that they can build up a really good mask and look like they do not have whatever complex needs or disability they have.

The Mori community in New Zealand has a beautiful word for autism. It is Takiwtanga and means in his or her own time and space. It is a lovely way to characterise someone with autism or additional sensory needs. It is incumbent on us to learn a little bit more about autism. We are all learning about it but there is so much more we need to understand as parents, legislators and caregivers.

As I said at the beginning, all services like occupational therapy and speech and language therapy should be delivered in preschool and education settings. The idea of parents taking their children out of an education setting in the middle of a school day to attend a treatment session that lasts half an hour is nonsensical. It is a damning indictment of the system. It is also wrong that all of this money is spent on the assessment of needs when there are no therapies at the end.

I cannot even look at the report that has been circulated because it is so upsetting. Both I and Senator Seery Kearney live and work in community healthcare organisation, CHO, 7. The Department has produced statistics, and I know the Minister of State is sickened by them, that only 10% of people have commenced a stage 2 assessment and no one completed a full assessment in CHO 7 in the last quarter of 2021. No assessments are being made and no therapies are being delivered in CHO 7. Imagine how guilty the parents feel about being unable to access therapies for their children. I find it hard to fathom such a situation and believe we need to do a lot more. We need to analyse the viability of the assessment of needs framework given we do not have the staff to complete therapies. Parents just want therapies and to learn how to help their children.

The Minister of State is the woman for this job because she has invested a lot of time and energy and helped to clear pathways. It seems she is swimming up current so she must be frustrated by this situation. I commend her on doing great research on this issue and meeting many families. However, we need to consider the assessment of needs in a different way because it does not work.

The next speaker is Senator Warfield. He will be followed by Senators Conway and Kyne who will share time.

I welcome the Minister of State to the House. I apologise for missing her contribution because I had to attend a briefing provided by the Department of Housing, Local Government and Heritage ahead of tomorrow's legislation.

In advance of this debate I took the opportunity to read the discussion that took place at the meeting of the Joint Committee on Disability Matters in May on the topic of the progressing disability services model and the withdrawal of occupational therapies from schools. Much of this has been discussed here but it is apparent that there were a large and growing number of children on the waiting list for an assessment of needs, with many having waited for very long periods. I know once-off funding of €7.8 million was provided in June 2020 to address the issue. Overdue assessments of need stood at around 6,500 in June 2020. By September of this year, approximately 6,040 children had an assessment completed, so the backlog was reduced to around 520 cases. While this process greatly reduced the waiting lists for an assessment of need, it was achieved by transferring many therapists away from conducting actual therapy interventions to conducting assessments of need. While many children had their needs assessed, they have not yet received any of the therapies identified as needed in their assessments of needs, and the list of children to receive therapy interventions has grown.

At the committee meeting last May, it was also stated that 40 children's disability network teams were up and running and the rest - 91 in total - would be up and running by the end of the second quarter. I do not believe this commitment was realised. I saw a question asked by one of my party colleagues, Deputy Pauline Tully. In September, the Minister, Deputy McGrath, acknowledged that only 83 of the children's disability network teams had been fully configured and the remaining teams would be configured by the end of November. I would be interested in hearing an update on that from the Minister of State present.

The success of PDS was dependent on proper planning of the change and resources being made available to the new CDNTs set up around the country. Neither has happened and confusion now abounds in the this area of children's disability.

Senators Ardagh and Seery Kearney have spoken about the local experience.

Reports are coming into constituency offices throughout the State regarding ongoing issues with some CDNTs that have been established, such as insufficient staff, low morale, with staff finding it difficult to cope, constant turnover of staff, and many children not receiving the therapies they require. Some children are being told they will have to wait two to three years for various therapies. Although funding was made available for the recruitment of additional therapists, the HSE is finding it hard to recruit some of the professions, especially psychologists. I call for the remaining CDNTs to be configured and resourced properly. There is a need for a significant increase in therapists across all disciplines, as the Minister of State mentioned. Psychologists are in particularly short supply. There needs to be a ramping up of service delivery. Children need access to consistent therapy interventions. Training courses for parents are welcome in addition to access to therapy interventions but should in no way be used to replace face-to-face interventions from therapists.

Finally, the issue of the transfer of medical records to the national disability network teams needs to be sorted out as soon as possible. I thank the Minister of State for coming to the House and the opportunity to put on record some of these matters.

Senator Conway proposes to share with Senator Kyne. Is that agreed to? Agreed. They will be followed by Senator O'Loughlin.

I welcome the Minister of State. I agree with the sentiments expressed by Senator Seery Kearney and others regarding the Minister of State's personal passion and commitment. There have been other Ministers who might be described as bluffing. Maybe they tried their best but certainly the work of the Minister of State and the way she approaches it is peppered with sincerity. If delivery does not happen it will not be for the want of trying. However, I am convinced delivery will happen. Universal access is needed throughout the country. We cannot have a situation where in Senator Seery Kearney's area people are not being looked after. They are not even getting their assessments, not to mention treatment. In CHO 3, which is my area, access is patchy. In some areas the system is improving, albeit from an extremely low base. In other areas, the system is very poor. As the Minister of State will be aware, early intervention is critical for young people. If they receive treatment at an early age, their chances of living a fulfilled life increase, a life where they will make a valued contribution to our society. Last week, I attended the launch of an employment strategy by the National Council for the Blind of Ireland, NCBI, by the Tánaiste, which highlighted that 75% of blind and visually impaired people in this country are unemployed. That is a shocking statistic. What is even more shocking is the wasted resources that the country badly needs, yet the opportunities are not there. That is extending as we move into 2022. Compared with how things were in 1982, a great many people are now waiting for assessments and treatment. If they were to get the assessments and treatments, imagine the contribution they would make to our society. They could be Oireachtas Members or be involved in business or the professions. We have a moral obligation to equip them to do what they should be able to do. This is the challenge of our generation. We need to step up to the plate. I hope this structure works and creates universal access regardless of where a person lives, be it in a rural or urban area or any part of Dublin, in order that he or she can access the supports, facilities and therapies to give him or her the best chance in life to make a contribution to society.

I welcome the Minister of State. I agree with others regarding her passion and indeed the frustration as expressed in her opening contribution regarding the present system which is not working to the satisfaction of families. Families who have special kids are often frustrated. They are very tired at the best of times. It is a constant fight in many cases to get the services that they deserve, and require. I am a member of the Joint Committee on Health, which received an email from Down Syndrome Ireland outlining how families are reporting a complete breakdown in services, with many receiving no therapies, sometimes for years at a time. Surveys show that almost half of families with a child with Down's syndrome, just prior to the pandemic were offered no therapy in the previous year. Those who were offered therapy averaged just five sessions, which is well below that needed for best practice.

Regarding the reconfiguration, Down Syndrome Ireland carried out a survey, which found 95% of people are either unsure about how their services will be affected or believe they will receive a poorer service. They believe there are just not enough therapy posts for the levels of therapy for every child who needs it. They talked about frustration, inconsistencies, staff turnover, short blocks of therapy, long breaks in between, and therapists being absent on long-term leave or redeployed. That is the reality. It is a tale of woe unfortunately, but a reality for Down Syndrome Ireland. I am sure the Minister of State is in communication with all services providers and advocates. It is important to put those facts on the table as well. Her predecessor initiated progress on children's disability services and talked about a person-centred approach, the excessive waiting times for therapy services, and children achieving their full potential, maximising their independence and living rich and fulfilling lives. These are all words. If they can be put in practice and if the improvements and changes can be put in place for the service users, the children, to get the service that they require and deserve so that parents can know what to expect and are not always fighting, although all parents will continue to fight for the education and well-being of their children, the parents will know they will get a service that is deserving of them. I wish the Minister of State well in her role and in the plans she is progressing.

I welcome the Minister of State. We are glad to have her here for this important debate. I came across a quote recently and thought it worth sharing: "The human spirit is one of ability, perseverance and courage that no disability can steal away." I want to talk about spirit in a number of ways. The first is the Minister of State's own spirit. She has the spirit of empathy, courage and perseverance. I know first hand of personal interventions she has made to ensure that somebody can have the pathway they deserve, and in regard to the reforms she is bringing about.

The HSE is a very big animal. There are excellent people working within the HSE but all too often a Minister or Minister of State can be an apologist for what happens within the organisation. In the first words of her contribution, she said she is not a spokesperson for the HSE, and that she is going to hold it to account and take it to task. That is hugely important and refreshing. We need to hear that here today.

I am thinking also of the spirit of so many parents throughout the country who are battle weary from the constant fight they have had, either from when their child was born or from when they had a diagnosis. The two dates can be completely separate.

Spending many hours and getting pushback all the time is very difficult and wearying.

It is very important to try to keep alive the spirit of the parents and the spirit of the child with the disability. I am privileged to have my brother who has such a shining spirit in our house. One of my sisters described him as the Buddha in our house. His ability to do so many things is celebrated by all of us and not his disability. The Minister of State is tasked with finding that progressive strong spirit within every person she represents and the families and parents she represents.

We often talk about the culture within disability services and within the HSE, which certainly needs to change. I know how hard the Minister of State worked last year to get that extra €7.8 million to address the issue of overdue assessments of need. It is wonderful that happened. However, unfortunately, that has rolled on to the interventions, meaning families find they have now just moved from one waiting list to another. They will then move to a further waiting list and so it goes on. That issue needs to be addressed.

While the money is important, the most important thing is the outcomes - the difference the investment will make to that individual, to their family and to society in general. It is related that the rate of poverty and social exclusion for people with disabilities is among the highest in the EU at 38.1%. Ireland has the lowest employment rate of people with disabilities at 32.3%. That must change and it is very much tied in with the progressing disability service programme and the assessments of need.

We also need to talk about social prescribing. I appreciate that is the responsibility of the Minister of State, Deputy Feighan. I thank the Minister of State, Deputy Rabbitte, for listening to what the Kildare Down's syndrome group had to say about the programmes it runs on horticulture and literacy. It is so important that once young adults leave school, they do not lose that level of literacy. They need to keep it to be able to continue with their lives in their own communities. The horticulture programme is very important. The programme is linked in with the Tidy Towns. The young people involved grow vegetables and fruit for local restaurants etc. It is very important to think in a connected world.

Disability proofing cannot just stay with the Minister of State and her Department. It needs to be done in conjunction with the Department of Education and Skills, and involves positive mental health and so many other areas. We need disability proofing at budget time across every level.

As the Minister of State said, bringing in additional administrative staff is very important. Our therapists need full support and they do not need to spend their time encountering red tape and writing reports. That move alone will lead to a positive outcome. The adequate and appropriate funding is very important. The clear commitment across Government to equality funding is very important. I wish the Minister of State well. It is a significant task, but I have no doubt she will make a major difference to it.

I wish to share time with Senator Carrigy.

Is that agreed? Agreed.

I welcome the Minister of State to the House and thank her for taking statements on this very important matter which affects so many families. I share her vision and desire, and the vision of Government and the HSE, that children's disability services be easily accessible, that they be fair, that the families and health services in schools would work together to support children, that services be based on a child's need rather than their diagnosis, and that children have services available wherever they live. I knowledge the positive developments implemented by the Government and the previous Government in the disability services sector.

I do not want what follows here to be viewed in any way as negative or a criticism of the staff who work tirelessly every day. It is important to give an accurate reflection of the various matters that have been highlighted to my office. Obviously, the roll-out of the new standard operating procedure to assess the needs of children more adequately and bring consistency to the assessment of needs process across all CHOs, which was due to be implemented by the HSE in 2020, is experiencing delays, as the Minister of State has acknowledged.

Parents of children with additional needs consistently contact me. They are exceptionally frustrated, tired, worn out and confused about the process and the reorganisation in the area. There is a lack of consistency within the various networks. Children who are on old waiting lists for intervention therapies are now being reassessed and put on a waiting list again. While I acknowledge the issues with recruitment and retention within the sector - I think the Minister of State mentioned 400 vacancies in her opening statement - it is obviously very hard to explain to parents who are often at their wits' end.

The vision for children's disability services states that services should be based on a child's need rather than diagnosis. Unfortunately, from my experience that is not the reality in many cases. Parents have repeatedly told me they are desperate to access services for their children, who may be non-verbal or require support with toileting, diet or social skills, but have not yet received a diagnosis owing to the waiting times. Without such a diagnosis they obviously cannot access the various services. In some cases, they cannot be accepted into autism spectrum disorder, ASD, classrooms at the onset of primary school.

I do not want to seem critical because I know the Minister of State is committed to resolving the many issues in the sector. I believe the reconfiguration is a step in the right direction. I acknowledge her positive contribution in saying that specific administrative officers will be allocated in the area. We need to improve the communication with families. I ask the Minister of State to intervene to ensure children who have been on waiting lists for a considerable period are not just put on another waiting list to access therapeutic services.

I echo the comments of the Members about the excellent job the Minister of State is doing, in which I fully support her. I look forward to working with her. I have frequently spoken to her about autism services. She is planning to complete a non-statutory report into autism services. When the Oireachtas committee which we discussed is established in the near future, I look forward to speaking to NGOs and families to feed into that report and finally deliver for those families.

I know this relates more to special education. I am concerned at a media report today that only one in five students from special schools accessed the July provision this year. This needs to be looked at and we need to ensure it does not happen again.

The progress in disability services policy states that the aim is for children to receive health services they need as close to their home and school as possible. That is something that I fully believe in, which is the whole-school inclusion model that the Minister of State, Deputy Madigan, is working on and which was trialled in the CHO 7 area and was very successful there. That is the model we need to invest in further and to progress.

The policy also states a children's disability network team of health professionals needs to look after the children. That is where we have a serious problem, which is the actual number of health professionals, something I believe the Minister of State referred at the start, specifically the shortage of them. The €7.8 million that was put aside for this in the budget had to be fought hard for by the Minister of State. In the greater scale of things, where we talk about delivering projects throughout the country that cost hundreds of millions of euros, it is disappointing we can only find €7.8 million to deal with the backlog we have. We owe it to the children to give them every opportunity in life and to support them.

I spoke about the 1916 Proclamation before. It is 105 years since the Proclamation was read out and we need seriously to ask the question whether we are cherishing all of the children of the nation equally. I think we are not.

More specifically, I want to ask a number of questions on my own area. I spoke about the lack of people in positions, in particular in the Phoenix Care Centre in Longford, where there is a waiting list of more than 600 children. My understanding as of this week is we are going to lose three speech and language therapists, one occupational therapist, OT, one physiotherapist and one psychologist and we already have 600 people on a waiting list. I ask if the Minister of State or her officials could come back to me with a reply as to when these positions are going to be filled and this waiting list will be tackled.

I also ask in respect of St. Christopher’s Special School, which is a school I know the Minister of State knows well and worked hard to provide funding for the staff there. The fact is we have a state-of-the-art school yet we have no access to speech therapy in that school where we have two classrooms. I ask that a proper assessment be done for the students in St. Christopher’s and that a proper programme be put in place for the special needs assistants, SNAs, who are working there and are prepared to do this work. I would greatly appreciate it if the Minister of State could come back to me with replies on these issues.

I re-emphasise what I said at the beginning that I have full faith the Minister of State will deliver for people with disabilities.

The Minister of State is very welcome. A great deal has been said but, personally, in the first instance, I pay tribute to the Minister of State and thank her so much for her own personal interest in the whole area of disabilities. I know she visited St. Gabriel’s School and centre in Limerick recently. I was present and have been involved with that school for more than 25 years. I know, from her initial visit up to her most recent visit, of the Minister of State's keen personal interest in this school and how much she brought to that whole visit together with the research she carried out herself. I also pay tribute to the staff in the CHO 3 area, which is the mid-west. St. Gabriel’s School and centre working alongside it form a private school and centre, and they are supported by a great deal of private fundraising. The Minister of State also announced two extra days for respite care, which is very necessary for families who are dealing with children with disabilities. It was very clear the Minister of State met many of the families and I want to put my gratitude to her for that on the record.

I know the Minister of State has hit the ground running since she took up her key role in disabilities. I also welcome the fact the waiting lists have started to come down. While I know they are creeping up a little bit again, I am sure the Minister of State will find a way of getting them back down.

The one thing that greatly concerns me at times is where I was dealing with a family with three children not so long ago, two of whom were autistic children and one of them had very profound difficulties. One of these children was 17 years of age and had still not been assessed within the whole system. I was very shocked to find that this young lad had reached 17 years of age without such an assessment. We made a representation and I understand he is to be called very shortly. It is frightening to think a person would reach 17 years of age in such circumstances. There are three children, 17, 15 and 12 years of age, and this concerns the 17- and 12-year-old children. While the 12-year-old was in the service, the 17-year-old had been missed. It just shows this can happen sometimes. The fact is the family had taken those children for a private assessment but yet the private assessment was not recognised within the public system. There needs to be some sort of a reckoning around that and perhaps it is an area that the Minister of State could look at.

Going back to the Minister of State's visit to St. Gabriel’s, we said there were a number of children on the waiting list who would very much benefit from the services. Everything is on site for them as to the services provided in the school. There are so many children there with such profound difficulties, but if the size of the school could be doubled, I know there would be enough children to fill it.

This debate is very timely but I believe the Minister of State has made a very significant impact. I also pay tribute to the Minister of State, Deputy Madigan, because I know that, on the whole education side of things, she has been doing a great deal of work on SNAs and the autism spectrum disorder, ASD, units. The two Ministers of State together are a force to be reckoned with. I look forward to working with the Minister of State in the future in this area and I am sure we will be seeing a reduction in waiting list numbers. I am looking forward to seeing her further announcements in the near future.

I thank the Senator very much. There is obviously a much better time system in Limerick, if I can be allowed to jest. I am delighted to welcome the Minister of State to the House and to endorse what has been said about her very proactive approach. I will take the liberty of throwing in a question myself now, which I ask the Minister of State to comment in answers, please, on residential accommodation for adults with disabilities, the amount of it, the lack of it, and where the Minister of State is at with regard to it.

I thank the Leas-Chathaoirleach and everybody who took the time to contribute to this debate. The contributions were fantastic and spread right across the country. Every CHO was represented and I was just checking that aspect as we were going along through the debate.

It is important to recognise we are all on the one page in that we all want to ensure we assist families, we do not want the fight to continue, and we need to ensure families have fair and equitable access to services. That is exactly what progressing disability services for children and young people, PDS, was always supposed to be about, which was fair and equitable access to services regardless of geographical location. Sometimes when you come from the west, you always think people on the east coast have more access to services.

This is the whole idea of PDS, in that we will have 91 teams throughout the country. I know Senator Warfield is gone from the Chamber, but at this time we have reconfigured 80 of those teams. By the end of this month we will have 91 done. The last three are being done in Mayo, where we are recruiting the managers there as we speak. From there, it is hoped, the system will start to settle because what the Senators are receiving in their emails and constituency offices is the state of flux of the transfer that is taking place at the moment.

I said at the beginning that much of this is paper and not technology-based, and where there is the configuring of the various lead organisations and team members working together who have never worked together before, this means staff have had to uproot as well make all this happen. At the centre of all this is the young people and their families and giving them that access to service. I pay tribute to the staff who have put in an inordinate amount of work. We heard from Senator Warfield that we had 40 teams in May and now we have 80. We have come a long way in that space of time, and by 1 December we will have the 91 teams. Great strides have been made and a great deal of work has been done by all of the staff working right across the country.

In my remaining time here I want to share with Senators what I expect from the HSE for the next 12 months, and perhaps when the House calls me back here again in a year’s time, I would like to be held to account, and not just me but also the HSE. We are funding this service so I have to hold it to account. As Senators Kyne and Carrigy and others have said, parents are tired of battling. I see my role as the advocate for that child and parent to ensure they have fair and equitable access to the service because that is the vision and the model we are funding. That is the expectation, so what I want to do is to hold the HSE to account.

I will share this with the House. Some Members might be hearing this for the first time tonight. From the start, on 1 December, every week I will be meeting with CHOs. I will meet three CHOs in the first week, three CHOs in the second week, two in the next week and so on. That is how I am going to do it. Then, in the final week I will meet with the HSE director of services and all of the leads. That is how it is going to be done every single month, month after month. After that I will have met with the likes of Dr. Colm Henry.

In answer to the Senator's question of what is an acceptable key performance indicator when one has a team, we will look at how many speech and language therapists and how many children should be seen across all of the teams and what this means with regard to input, output and access to services. We will ask what parents should be expecting and what I should see in the figures. If 100 children are coming in, should a team be seeing 100 children or is that too much to be expected? When we consider the team in Cork that went from 800 to 1,800, we must ask if it is a fair workload on a team when there are so many? Is it a case of just putting people onto a team and they are never going to access services? I genuinely cannot put people onto a team and send out letters saying that they will see somebody in five years' time. That is not acceptable to me, nor can I stand over it. I would not expect any of the lead agencies to stand over it, nor the HSE.

At this stage, I believe the HSE needs to be run like a business in relation to progressing disability services for children and young people, PDS, which is the reform piece within it. Every time they have an assessment, parents should be able to expect that the assessment should be an intervention. We need to move away from the practice of "we are all on an assessment". Everything should be an intervention. When a child or young person first goes in front of a therapist, that first meeting should be an assessment, as opposed to what the child is diagnosed with. If there is a need for speech and language therapy or a need for occupational therapy, we must get on with that while the team is still working out what the diagnosis piece is. Senator Ardagh spoke about this. The family just want the intervention, be it speech and language therapy, occupational therapy, physiotherapy or behavioural management. While we are working on the complex piece to put a name on the diagnosis at the very end, let us be getting on with the intervention.

I refer back to my opening contribution. I will be honest with the House that I was very disappointed when I saw what was laid before me in the last week. I was very disappointed. Members will see that in what I have circulated. I cannot accept that for three months in some CHOs in the State not only were no assessments done, but there were also no interventions. That is not acceptable. I will not stand over that. I do not expect anybody working in the HSE to think it is acceptable. I am not apologetic in relation to it. I absolutely believe the culture has to change. The culture needs to move from the assessment to that intervention piece.

Senator Cummins spoke about communication. Communication is absolutely appalling within the HSE. How we communicate en bloc, in a cut-and-paste manner, to parents is not acceptable. We need to tell parents the truth, but there is a way in which one tells them the truth. There is a way in which we bring people with us. It is not acceptable to tell a parent who is wondering whether his or her child's speech and language therapy is going to be delivered that he or she is not going to hear from the HSE for four years. If that is what the waiting list is when I get the final figures in the next couple of weeks, I will have to look at alternative methods of delivering service and intervention. In the budget this year, the Minister for Public Expenditure and Reform. Deputy Michael McGrath, gave me €10 million to spend on waiting list initiatives. I must first get all of my figures to see how we are going to do that. I am open to every suggestion around delivery. When we did this with the assessment piece, and with €7.8 million, we were able to clear a backlog of 6,000, and 92% was cleared in 12 months. I believe we can do something similar with speech and language therapy, operational therapy and physiotherapy services. It is a bigger challenge. If we have to rise to it, then it has to be done. Senator Carrigy has said that we have done massive development projects in this State but we still need to invest in our young people. We need to give them the intervention required to give them the best chance in life and the opportunities to be the best they can possibly be.

We also need to work closer with education. The Minister of State, Deputy Madigan, has a very good pilot project around the school inclusion model. We need to see how that model can work with my PDS to ensure that children have access to therapies, whether they are closest to home, closest to the school or in the school. Whatever works needs to be worked on. This is a fresh model that needs to be given every single chance to be rolled out. This is why we have 91 of them, so they are very close to all of our primary care centres.

As I said earlier, 12 months ago people were telling me that the standard operating procedures would mean I would never have another waiting list again, and I would be getting straight into my interventions. Needless to say, having seen where we are in the past couple of days with the figures, I am open to all suggestions. I am prepared to break it and fix it and break it and fix it until we get it right, as opposed to saying we will wait for it to work out. That is not how we can work with children's lives. That is not how we can work when a child needs speech and language therapy, occupational therapy or physiotherapy. Parents are tired of fighting. They are tired of the repeated fight to get access to a diagnosis, to get access to an intervention and to get the supports they need within schools. It goes on and on.

The Leas-Chathaoirleach asked me a particular question on residential adult spaces. There is always a shortage of residential adult spaces. At this moment in time, there is emergency and critical emergency. Between emergency and critical emergency, there could be 800 people waiting at this minute for access to residential places in the State. I believe that the way the model has been to date needs to be reviewed. Sometimes the key performance indicators for accessing the service seem to require the death of a parent or a sibling, which is the wrong model to be working on. We need to do early intervention a lot sooner so we can support people to have supported independent living and accommodation. We must move away from this idea of being reactionary so we can plan for building capacity into it. The good news in the budget this year is that I have also created respite places for eight houses for children and eight for adults to start building up back that capacity.

I thank the Minister of State for responding to my specific question and, more importantly, for responding very comprehensively to the Members' questions. I thank Senators for attending the debate in such numbers, for how engaged they have been and for how seriously they have taken this extraordinarily sensitive and serious matter.

Sitting suspended at 6.27 p.m. and resumed at 7.02 p.m.