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Dáil Éireann debate -
Tuesday, 29 Mar 2022

Vol. 1020 No. 2

Services for Children with Disabilities: Motion [Private Members]

I move:

That Dáil Éireann:

notes:

— the High Court judgment of 11th March, 2022, in C.T.M. (A Minor) v Assessment Officer and Anor, J.A. (A Minor) v the Health Service Executive 2022 IEHC 131, which found that the 2020 Standard Operating Procedure (SOP) adopted by the Health Service Executive (HSE) was causing its Assessment Officers to "err in law", and that the HSE do not intend to appeal this case;

— that the HSE is in breach of the rights of children with disabilities, as set out by the Oireachtas in the Disability Act 2005, when it does not conduct an Assessment of Need (AON) which identifies the nature and extent of a disability and the corresponding level of service need;

— that the HSE has not submitted a report as required under Section 13 of the Disability Act 2005 since 2015, despite being required to do so annually;

— that, when questioned about the deficit in Section 13 reporting, the HSE have blamed "the outdated database we are currently using" which "was developed by a small software development company, which no longer provides maintenance or technical support for the system", and acknowledged that "the database is 20 years old and has not had the necessary upgrades or technical changes in recent years", but stated that they intended to complete the outstanding reports by year end, in response to Parliamentary Question No. 762 of 1st March, 2022; and

— that fears have been raised by activists, families, and members of the Oireachtas that a review of the Disability Act 2005, as advised by the HSE, could lead to a dilution of the rights of children with disabilities;

reaffirms its commitment to upholding the rights of people with disabilities;

agrees with the assessment of the Ombudsman for Children that the review of the current AON operating procedure is now redundant, and the current procedure is untenable;

further notes the passage of the Sinn Féin motion in relation to Assessment of Needs for Children with Disabilities on 8th March, 2022, with the assent of the Government, which called on the Government to:

— establish Children's Disability Network Teams (CDNTs) in full;

— report to the Dáil on how it intends to ensure that all children have a proper AON and real access to the services which they need;

— publish a costed and timebound implementation strategy for the Disability Services Capacity Review and a cross-departmental strategic workforce development plan; and

— transparently publish all waiting lists for these services; and

calls on the Government to:

— ensure that the rights of children with disabilities are not undermined and, that, if the Disability Act 2005 is to be reviewed, the existing rights of people with disabilities are not diluted and that children with disabilities have access to the services they need;

— immediately ensure that the Assessment Officers' System Database which is used to manage and report on AON and access to children's disability services is updated to reflect changes in policy, operational practice and user requirements;

— engage in proactive, joined-up workforce planning to develop a cross-departmental strategic workforce plan for the breadth of health and social care services, streamline the recruitment process, and work to entice health and social care professionals who have recently left the HSE to return to the public service;

— review the critical skills list in the context of demand for health and social care professionals, while remaining cognisant of the State's international obligations;

— urgently implement the Optional Protocol to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) allowing individuals and families means to challenge the Irish Government on any current or future failures to guarantee the rights contained within the UNCRPD;

— provide a job guarantee to health and social care graduates and proactively engage with them during their degree to advise on employment options in the public health service;

— lay a report before the Houses of the Oireachtas within three months outlining in full the number of Whole-Time Equivalent staffing posts that will be provided to children's disability services for 2022, including the details of the package of supports to provide CDNTs with additional resources to address the backlog of AON and AON which were conducted incorrectly, and to provide additional therapeutic supports as indicated by the Minister of State at the Department of Health, Deputy Anne Rabbitte, in her address to the Dáil on 8th March; and

— report back to the Dáil before the summer recess on how it intends to fully address the matters in this motion and the motion of 8th March, 2022, and lay each outstanding Section 13 Report before the Houses of the Oireachtas by the end of the year.

The focus of a recent motion on disability services was to call on the HSE to stop using the standard operating procedure, SOP, which involves carrying out preliminary team assessments and implying to parents of children with disabilities and additional needs that this was fulfilling the statutory right of a child to a full and proper assessment of need. We indicated that this is not the case and that the HSE must stop trying to avoid its obligations under the Disability Act 2005.

Our call has been further vindicated by the recent High Court ruling in C.T.M. (A Minor) v. Assessment Officer and Anor, J.A. (A Minor) v. the Health Service Executive which found that the standard operating procedure adopted by the HSE in 2020 was causing assessment officers to err in law. I welcome the fact that the HSE does not intend to appeal this case but urgent measures must be taken to ensure that all children with disabilities are getting access to a proper and comprehensive assessment of need which would identify the nature and extent of disability and the corresponding level of service needed. Children are entitled to this assessment within a period of six months from when they first apply, with an additional month to allow for a service statement to be drawn up which will outline the precise services and interventions that they would require, going forward, to address their disability or additional need.

There is a serious problem among the 91 children’s disability network teams, CDNTs, because it seems that none of them is fully staffed and in fact many of them are operating on a 50% to 60% staffing level. Even if the staffing level was at 100% of the level currently resourced, it has been relayed to me by numerous staff within the CDNTs, including management, that this would still not be sufficient to meet the level of need among children requiring assessment and services. Parents are very aware of this, with one parent responding to a survey from Down Syndrome Ireland by saying that there are not enough therapists to deal with the increased numbers, that there is already a major shortage, and that their client load will now be completely unmanageable.

It is this shortfall in staff and resources that has led to the long delays that parents of children with disabilities face, the extent of which is reflected in a recent report from Inclusion Ireland which states that many parents have reported that their children have spent a significant time on waiting lists for services. Some 85% reported that they had waited or continue to wait for more than a year. Of these children, 27% were waiting two to four years, 16% were waiting four to six years, and 5% for six years or more. We need to see a fully costed implementation strategy and a strategic workforce development plan within a specific timeframe indicating precisely how the shortfalls in the disability sector are going to be addressed.

There are very significant problems within the recruitment procedures for therapists and clinicians to the disability network teams. The recruitment systems to me seem to be archaic and take an inordinate amount of time to actively recruit someone to a position. We need to see an end to the national panels and instead look at recruitment on a regional basis within a very short space of time. Many therapists have left this sector as they would not and could not agree to the preliminary team assessments. Now that the High Court ruling means that this practice must cease, perhaps some of those who left could be enticed back to the sector if offered positions at suitable grades.

The disability sector is receiving bad press due to the preliminary team assessments and the long waiting lists that are ever-growing for assessments and therapies. This was reflected recently in a survey conducted by AsIAm which found that 54% of respondents felt very dissatisfied with the support services from the HSE for their autistic children, with as many as 65% of respondents going on to express dissatisfaction with the broader disability services. This is unfair on the very dedicated staff working within the disability sector where teams are under-staffed and under-resourced to carry out the tasks that they have been set. This negative publicity has become so bad that people are reluctant to work in this sector. This must be addressed. The blame for this lies entirely with Government policy and with years of neglect of this sector. There is a need for a long-term plan to address this to ensure CDNTs are fully staffed and fully resourced in the years to come.

I am very concerned about the children who require intervention and therapies now. Early intervention is vital for children to progress in life. Many who do not receive early intervention cannot progress to be the best version of themselves and will require more interventions and supports in later life, meaning that they will be less able to lead a fully active and independent life. The Government needs to look at urgent measures to address the immediate requirements within the sector to ensure that all children’s needs are met.

This is the second motion in three weeks that Sinn Féin has brought forward on this issue and the reason we have brought it forward today is because of a High Court ruling that has taken place since we moved our previous motion. We warned the Government that the HSE and indeed the Government itself were operating outside of the law when it came to providing children with disabilities with the comprehensive assessment of need that they are entitled to and that they deserve under the Disability Act 2005. That is what we have been saying for some time. The Government ignored our calls and those of parents and forced many parents to take the HSE to court, some hundreds of whom have done so. In this case, two parents took a test case and they won. Fair play to them because they were standing up not just for their children but for all children.

I appreciate that the Minister of State, Deputy Peter Burke, is nodding his head in agreement. We are all in agreement in this House that more needs to be done. We also have to be honest, however, and say that it should absolutely fill every single one of us with shame that time and again parents have to go to court to get basic assessments done, to get services for their children or to get the HSE to operate within the law.

This is not only the case when it comes to assessments of need. Under the 2005 Act, the HSE is legally obliged to furnish the Minister for Health every year with what is called a section 13 report which outlines the aggregate need of all of the children in terms of therapies, supports and services. Not one of those reports has been submitted since 2015. When I raised this with the head of the HSE and its officials at the Joint Committee on Children, Equality, Disability, Integration and Youth, the casual approach by senior management in the HSE was absolutely shocking. I am dumbfounded when it comes to the lack of accountability and transparency in the HSE. When it comes to disability services for children, where the HSE has been found on numerous times to be in breach of the law and of its statutory obligations, one would imagine that the head of the HSE and the head of disability services would come into an Oireachtas committee, put their hands up, apologise, admit it was shameful and say that they were going to fix the problem.

I hope the Minister and the Government would say the same and start to fund children's disability services properly so children can get the assessments and services they need.

The Minister of State at the Department of Health has been telling us for months in the House, and I know she is sincere when it comes to this issue, that we are reducing the waiting times for assessments and that we have almost cleared the waiting lists. We were asked to give this information to parents. We took that information to the parents, but they tell us this is not the case. As it turned out, it was not the case. What we had was a sleight of hand with children thrown from one list to another. More than half of all the children who had a preliminary team's assessment have seen that set aside by a High Court judge as it was operating outside the law. Half of the children who had this preliminary teams assessment needed a multidisciplinary team assessment and have now gone onto a separate waiting list. After going through all the agony of waiting for an assessment only to find out it was not an assessment but a screening and then to be put on a different waiting list, it is heartbreaking for parents. I have met many of them and I cannot tell the Minister of State how angry they are that they do not see action by the HSE and the Government.

Can the HSE and the Government please stop breaking the law when it comes to children's disability services? There is no other area where the HSE is on multiple occasions and in multiple areas in breach of its statutory and legal obligations. Why is it tolerated when it comes to children's disability services? Stop breaking the law and cutting corners. It must provide the disability teams with the staff they need. We are setting out solutions in the motion, and we did so on the last occasion. We want children to have a comprehensive assessment of need. That means we must recruit staff to build up assessment teams. Equally, there must be a workforce planning strategy that deals with training more therapists and support staff and recruiting more and retaining more. If we do not do that, we will continue to fail children.

I will conclude with a final comment. I have spoken to many children who have not received the services and I have also spoken to young adults. They feel they have been failed. They are young adults and they did not receive early intervention and the supports they needed. The developmental opportunities that were there for them have passed them, and they are angry. They do not want to see that happen to any more children so, please, stop breaking the law, properly resource the services and stop letting down the parents and children with disabilities. It is shameful.

That it is necessary to bring such a motion before the House tells its own story, the story of how this Government and previous Governments have failed to prioritise children's disability services. The Government and the HSE are required by law, as Deputy Cullinane said, and by decency to protect the rights of children with disabilities. The motion calls on the Government to fulfil the law, to uphold the rights of children with disabilities and to provide them with the services they need. Under the Disability Act 2005, an assessment of needs must be provided and it must be completed within six months of application. This month, the High Court ruled that the assessment of needs process of the HSE was operating outside the law and that it denied children with disabilities their rights. It is a shameful episode and a vindication for so many children and their families, who have been failed in respect of what they were entitled to. They deserve much more from the Government and the HSE.

The court found that the current operating procedure being carried out by the HSE, which was introduced by the Government in 2020, effectively allowed it to breach its obligations. The HSE has repeatedly breached parts of the Act passed by these Houses. It consistently failed to submit reports to the Minister. The Government and the HSE must live up to their obligations under the Disability Act 2005. They have to live up to the law of this State when it comes to children with disabilities. Waiting lists for children's disability services and interventions are out of control. They are failing children and families. In Donegal, there are currently seven vacancies and more than 1,000 children awaiting assessment for occupational therapy, speech and language therapy and psychological services. Some 580 of these children are awaiting primary care speech and language therapy and have been on a waiting list for more than eight months. Many of them are waiting for more than a year.

This motion calls on the Government to act and to develop and implement a strategy whereby staff can be recruited and retained to deliver services. It commits to a review of the Disability Act to ensure it is not undermining the rights of children with disabilities or scaling back on provision. Crucially, it says the Minister has to start complying with the law, and the HSE has to do the same.

The recent High Court ruling of 11 March is a damning indictment of the HSE assessment of needs process. This process has denied children with disability the right to a proper assessment of needs. Standard operating procedure is leading assessment officers to err in law, often leading to catastrophic consequences for children. It is absolutely astounding that this process could continue for so long in this manner. It is an additional affront to the parents of children with disabilities that the annual report required by the Disability Act has not been submitted by the HSE since 2015. No report in six years and no action being taken in this regard is absolutely scandalous.

The High Court decision must be heeded and the Minister of State with responsibility for disabilities must act urgently to address the shortcomings in the assessment of needs process for children with disabilities. My colleagues brought forward a motion on this matter on 8 March last and, quite correctly, the Government did not oppose it. Now, it must implement the calls made in that motion so this denial of rights can be rectified. Nothing short of this will do. The rights of children with disabilities cannot be denied any longer. As I said previously on this matter, parents should not have to contact their local Deputy in an effort to have their child seen by an assessment officer. Unfortunately, in many cases this is what they have to do. The Minister must act swiftly. One of the most important elements is to ensure the current assessment of needs process is binned as it is not fit for purpose. The IT system and data bases blamed by the HSE must be upgraded immediately to accurately maintain and report on the data, as required under the Disability Act, since 2015.

We must see action from the Government now. We must ensure that children are not waiting and that this court decision is heeded. The Department must act on that as a matter of urgency. Children cannot wait much longer for that.

Representatives of the HSE, including Mr. Paul Reid, appeared before the children's committee last week. Under questioning from Sinn Féin, the HSE admitted that it was in breach of the law when it comes to providing children with disability an assessment of needs. This should come as no surprise to the Minister of State, Deputy Rabbitte. I first raised this issue with the Minister of State when the comprehensive assessment of needs was changed to a 90-minute desktop assessment. At the time, she assured the committee that this change would lead to children getting a better service and receiving the life-changing interventions in a timely manner. This did not happen. Waiting lists for occupational therapy, speech and language therapy, psychology and physiotherapy are growing every day.

Does the Minister of State accept that the change that led to that breach in the law happened under the watch of the Minister of State, Deputy Rabbitte? Does the Minister of State accept that this change only happened under the current Government's watch, not that of the previous Government? Who is going to be held accountable? Will it be the Minister of State, the HSE, both or nobody? We have seen the circling of the wagons by the HSE after the scandal in south Kerry child and adolescent mental health services, CAMHS, in which children were over-medicated to the extent that they lost their personalities. Nobody in a senior position in the HSE, or in the Government, has been held to account for that so far.

The breach of the law this time has failed children with disabilities, to the extent that they may not reach their full potential. They may not reach their developmental milestones. Is there anything more heartbreaking than a child not being given every chance possible just to grow as a person, physically, mentally and emotionally? Who is going to answer for these failings under this Government's watch? I agree with the Ombudsman for Children, who has said that the HSE is deploying the old-fashioned, three-card trick by moving children from list to list without getting the service they need at the end. Moving children through the alphabet soup of HSE disability lists, such as standard operating procedure, SOP, assessment of need, AON, children's disability network teams, CDNTs, individual family support plans, IFSPs, early intervention teams, EITs, occupational therapists, OTs, and speech and language therapists, SLTs, is simply not good enough.

Parents demand a service that provides children with disability with the care they need, when they need it and where they need it. Apologies at this stage will not cut it. Children and parents deserve the services they need, and children deserve the interventions they need in a prompt manner.

It has been said by my colleague, Deputy Cullinane, that what is happening to children throughout the State is shameful. I commend Deputy Tully on tabling the motion. We are returning to this issue because in the intervening period since we last raised it the Government has been found to be in breach of the law. It is in breach of the Disability Act.

We need to think of this issue more than in terms of systems, teams and clinicians. There have been far too many in the HSE and perhaps the Government who have thought of it only in these terms. They have not tried to stand in the shoes of the parents and the children affected by this. I get phone calls, as I am sure the Minister of State does, from parents who are encountering this new system but have no idea how to navigate it. Children are being discharged from the system without parents being informed. They are being moved from area to area and from list to list. Parents do not know how to navigate this. They find that they cannot get an assessment of need. They get appointments for another waiting list. Even after all of this, the time that people are waiting for therapies is absolutely scandalous. This is about children not being able to reach their full potential. This has implications for us all. It has implications for society as a whole. It has particular implications for those children and their ability to thrive in education and in life and to enjoy school and society so they have the best impact possible.

Last Friday, I visited a school in County Waterford. An example was given to me of someone who received an occupational therapy appointment three and a half to four years following the previous appointment. The person was asked whether they wanted the appointment. This is the level of service some children are getting. There are years between therapies. During that time there could be regression or all sorts of issues.

The teams are completely understaffed and they were completely unprepared for the change in policy. In one instance a parent was told by a member of staff in the HSE to get onto the local Deputies to raise it because the team was completely swamped. This is the reality. There are excellent clinicians working on the ground but they are completely demoralised by being on teams that are totally under-resourced. They see children being let down and they know they do not spend the time that they should with these children. It has been stated clearly in black and white that the Government is in breach of the law. This needs to end. We need proper AONs and we need the therapies these children deserve to ensure they reach their full potential.

I thank the Deputies for tabling the motion. I welcome the opportunity to restate the Government’s commitment to children with disabilities and their families. It was just three weeks ago that children's disabilities services were also the subject of a Private Members' motion. On that occasion, my colleagues, the Ministers of State, Deputies Rabbitte and Butler, articulated the challenges, merits and, indeed, faults in the provision of disability services for children in Ireland today. I can say without fear of contradiction that everyone in the House strives to improve access and reduce waiting times for children who require therapy supports. The AON process can be a part of the journey families take in obtaining these supports. Recent events have caused the approach taken to date to be reconsidered. For this reason, the Government is not opposing the motion.

Later on in his contribution, the Minister, Deputy Donnelly, after listening to the contributions of all the Deputies in the House, will address the substantive issues surrounding the recent High Court judgment concerning the SOP for children as regards the assessment of need, the provision of section 13 reports by the HSE to the Department of Health and his vision of the roadmap ahead for children's disability services.

We all want the best for our children. We want the best education to give them the best start in life and the best health services to be available for children when they need them. For those parents of children with complex needs, we want the best disability services to support each child to achieve their full potential in life. It is incumbent on the Government to constantly endeavour to improve services for children with developmental disabilities and their families. We must seek to develop the most appropriate models of therapeutic responses and supports so that children with complex needs have an environment whereby they can thrive and achieve their potential.

It would be wrong to ignore the fact that there have been difficulties in certain parts of the country in the implementation of the progressing disability services programme by the HSE. These issues have resulted in delays for some families in accessing much-needed assessment and intervention services for their children. The Government is fully committed to ensuring timely access to high-quality health and social care services for all children and young people who require them. We must work together to find suitable means to overcome the constraints affecting service delivery. I know the Minister of State, Deputy Rabbitte, is addressing this with the urgency that is required.

One of the criticisms of the family-centred practice model is that parents are now being asked to take on the role of therapist for their children. It is important this issue be addressed as there has undoubtedly been a great deal of confusion around it. I understand there is existing and growing evidence that more traditional models of service may provide limited skills retention and transfer into the child's everyday life. Supporting and empowering families and others to work with the child in their natural everyday environment is, however, considered to be more effective. The child or young person is no longer solely reliant on one-to-one input from specialists; rather, those who surround him or her day to day are empowered to maximise opportunities for growth and development in their everyday environments. The current clinical thinking on this issue is that it provides an holistic approach to the provision of therapy supports. However, as stated publicly by the Minister of State, Deputy Rabbitte, the HSE's messaging around this has not been clear and it has been perceived as shifting more responsibility onto parents. While all families are willing to do their very best for their children, parents or guardians are not therapists. The family-centred approach must be underpinned, supported and facilitated by specialist therapy personnel. Nobody is trying to remove clinical supports from children. We need to bolster them, not reduce them.

The family-centred model is a complementary approach to providing therapeutic supports, rather than an alternative approach which has been suggested. As children journey through childhood, different approaches and models of intervention may be recommended at different times to meet the individual child's emerging needs. It is vital that there is buy-in to this approach. This is why it was important that the HSE facilitated two national conferences in advance of the reconfiguration of the network teams. These were themed on partnership and family-centred practice respectively. They were for staff and, more importantly, for families. These conferences highlighted the move from the previous uni-disciplinary service provision to an authentic child and family-centred model of service. I note that the two events were attended by 750 and 1,500 participants, respectively. This is a collaborative approach to address the needs of children with complex needs and will require commitment and co-operation between families, educational institutions, healthcare providers and professionals and other stakeholders. This is all with one single unity of purpose and objective to ensure each child with a disability receives the best and optimum level of therapeutic supports required to meet his or her needs.

While accepting that significant levels of health and social care services in the community were curtailed due to the Covid-19 pandemic, I understand the HSE has confirmed that the restoration and continuity of services has been progressed in a safe way in line with the significant investment made by the State and funded agencies. The HSE continues to work with service users and their families and carers to ensure that we achieve this aim.

We need a collective approach along with renewed ideas as to how services can be consolidated effectively and enhanced. Not one of us here this evening wants to see a child waiting any longer than necessary to access therapy supports. I assure all that the Government and, in particular, my colleague, the Minister of State, Deputy Rabbitte, will remain focused on providing the best possible services we can to ensure those with disabilities and their families receive assistance.

I commend my colleague, Deputy Tully, on tabling the motion and I welcome the opportunity to speak to it. Similar to all Deputies, my office has received countless contacts from parents of children with disabilities who have experienced serious issues in accessing the services they deserve. The lack of resources for services for these children amounts to neglect. The State has an obligation to these children. They are entitled to care under the UN Convention on the Rights of Persons with Disabilities, UNCRPD, and domestic law. Children who need these services but cannot access them are being left behind. As do all parents, parents of children with disabilities want the best for their children.

They want to give them the best opportunity in life but parents are having to fight tooth and nail to get the access to services their children need. Parents have gone through the courts to get such access, as seen in the recent High Court ruling that found that the Government was in breach of the Disability Act. It is appalling that these children are left to wait so long for intervention. It is completely unfair and it is an injustice.

Early intervention is key. These kids cannot wait any longer for access to services and they should not have to. We need targeted investment in this area and we need to work to retain the staff who work in it. It is on the Minister of State to act in the interests of these children and their families. That is Deputy Rabbitte's job and it is time she got on with it.

I am really pleased to contribute on this Private Members' business this evening and I commend my comrade, Deputy Tully, on sticking with this important issue. I am speaking on behalf of my exhausted constituents across Kildare North who fight day in, day out for the services their children with disabilities need. They are hanging on by the proverbial thread like Aisling is for her son, Jack, and like Lourdes is for her son, Conor. These are mothers who have become advocates. The services they seek are the right of their children as citizens of this State but they are still only granted as if they were favours or wishes come true. This idea of services coming as favours is evident in the number of people who have contacted me about difficulties they have had with the services they are getting. I will not mention their names in this, their Dáil, tonight lest they be deemed troublemakers and their complaints held against them. If only the State was as diligent in its provision of services and assessments of need as it is in keeping lists of the number of times troublesome or annoying parents made contact, we would at least be going in the right direction. I know this because it happened to a constituent of mine in Kildare North. HSE staff could give her a blow-by-blow account of the number of times she had to make contact with them as if she had been doing it just for the fun of it rather than out of sheer desperation.

We are here because the High Court deemed the State to be breaking the law by acting outside the Disability Act with regard to AONs and rights guaranteed in law. Instead of acting on the High Court’s findings the other week and thereby abiding by the law, it emerged in a committee meeting that a HSE official had suggested that the State amend the law so it could not be sued by young children who were losing function and movement in their young bodies while the HSE ducked and dived from its duties, which is absolutely outrageous. Let us make something very clear: children with disabilities are every bit as equal to children without disabilities and they are just as much citizens of this State. They do not exist so that people without disabilities can feel better about themselves or feel that they are being good Samaritans in granting favours to them. They are citizens in their own right. We call on the Minister to implement the optional protocol and to guarantee that any review of the Disability Act will not be manipulated to undermine the current rights of people with disabilities. We need that.

I also commend my colleague, Deputy Tully, on the work she has done on this particular issue, which is unbelievably important to many families across the country. The fear people feel when they find out their child is neurodiverse is heartbreaking because they know so many people in their situation who have been failed and they know that the same is in store for them. I know the Minister of State gets that but it seems the Government has no handle on how to get services up to an acceptable standard. It knows the questions but it is not delivering the answers that parents of children with disabilities need. When I hear Ministers speak in the Dáil or in the media, if feels like they have no power to change the way that business is done. They sound more like interested commentators than actual Ministers.

The number of autism spectrum disorder, ASD, classes in Dublin 6 is a very significant issue. The process under section 37A of the Education Act 1998 has delivered no extra places. Advocacy groups such as Involve Autism have highlighted the failure of this process in delivering ASD classes in Dublin 6 and Dublin 6W. More than €70,000 is spent every day bussing autistic children out of their communities to go to schools a long distance from their homes. In the morning, one child in a family will turn right while another will get onto a bus and have to leave their home. It is absolutely bonkers. A child in Pearse Street has to get on a bus or in a taxi and travel to Clontarf, on the other side of the city, to get to school. How does that make any sense?

This is ultimately the Minister's responsibility. The Department does not have the information it needs to plan for school places. The process of diagnosis starts with the Minister. The diagnosis of children is very important because, without such a diagnosis, children regress and cannot access the services they need to reach their full potential. If we are going to meet the demand for school places, we need children to be assessed as early as possible. The Minister needs to ensure that the HSE fulfils its obligations under the Disability Act. Families feel abandoned and Government is ultimately responsible.

I commend an Teachta Tully on her hard work on this issue and on tabling this motion. We tabled this motion to demand that the Government and the HSE protect the rights of children with disabilities and to ensure they can access the services they need. The situation at the moment is dire. Children are not getting an appropriate AON procedure and they are not accessing the services they need. Waiting lists for therapies and interventions are out of control and children's disability services are seriously understaffed. Frankly, it is disgusting for a Government and public health service to treat some of the youngest and most vulnerable members of society like this. We have heard excuse after excuse from the HSE and nothing ever changes. The Government sits on its hands and has allowed the HSE to become a law unto itself.

We all know how important early intervention is but the Government and the HSE are content to leave thousands of children and their families to languish without any support or help. Parents are at their wits' end. As it stands, both the Minister and the HSE are breaking the law. We know this from the recent High Court ruling that found that the current assessment of need procedure is not in line with the Disability Act. Most of us already knew this. Parents and those who work in disability services knew. The Minister for Health has to have known this all along and yet did absolutely nothing about it. The Minister of State has said that the Government is accepting our motion. He also said that it accepted our motion on this issue on 8 March. What we are calling for is action. I see a pattern here of the Government accepting motions we table because it does not have the balls to oppose them. Just look at this Chamber today. Let any parent who has a child who suffers with a disability look around this Chamber. Not one bloody member of the Government could be bothered to come in to listen to the debate and to what those parents and their children are enduring at their hands. They ought to be ashamed of themselves. We are looking for action and, by God, they better deliver it.

I understand the Deputy's passion but perhaps she would withdraw the unparliamentary language.

It is hard sometimes.

I understand. I thank the Deputy for withdrawing it.

I welcome the motion, which we will absolutely support. I note that the Government is not going to oppose it. If I may, I will quote directly from my copy of the Minister of State's speech. When talking about making the services more effective and the CDNTs, he referred to what the Minister of State, Deputy Rabbitte, has said, which is that:

...the HSE’s messaging around this has not been clear and it has been perceived as shifting more responsibility on to parents. While all families are willing to do their very best for their children, parents or guardians are not therapists. The family-centred approach must be underpinned, supported and facilitated by specialist therapy personnel. Nobody is trying to remove clinical supports from children. We need to bolster them, not reduce them. The family-centred model is a complementary approach to providing therapeutic supports, rather than an alternative approach, which has been suggested in some quarters.

I am glad that the Minister has at least clarified that, but it leaves a question over the constitution of the children's disability network teams. I note the presence of the senior Minister and I am glad to have the opportunity to address him directly. Where the teams have been created, there is acknowledgement that this is not a perfect model. Some work is ongoing internally on how those teams will be rolled out.

I can understand a proposal to bring families into the therapeutic process. However, the evidence shows that there is still a massive waiting list not only for assessment of needs but also for psychological services. I am not talking about CAMHS; I make a distinction between access to child and adult mental health services. There are 9,554 children waiting for psychological services at the moment; 14,619 waiting for occupational therapy; 8,666 waiting for physiotherapy; 33,106 waiting for some form of speech and language intervention or assessment; 5,590 waiting for access to dietetics sister; 16,838 waiting for ophthalmology services; and 8,457 waiting for audiology services.

I do not want to become excessively rhetorical about this because we are talking about children here. I am trying to understand how the CDNTs will evolve. The challenges therein have been well articulated. Parents and public representatives have pushed back on the HSE on that issue. The Government or the HSE did not buttress those teams with the resources to allow for the follow-on services such as I have mentioned. It is not just about the AON. The assessment is a vital element to get the child in the door but they then need the follow-on services. I have been around these Houses for a reasonably long period. I am confused over how the supply of professionals who will deliver these services will match the demand. I still cannot see how the Government will do that. We have not seen an articulation of that yet through what are supposed to be the children disability network teams.

I take the Minister of State, Deputy Rabbitte, in good faith, as we all do. We all welcomed when she pushed back on the HSE in the recent past in respect of the CDNTs. However, once a child gets through the AON, how do the follow-up services such as psychology, occupational therapy, physiotherapy and all have the other services wrap themselves around the same child with that need? That is the missing piece of the jigsaw.

I could give the Minister chapter and verse about the HSE's apparent lack of internalisation as an institution culturally of its need to be transparent about how it spends resources. The HSE does not seem to have internalised that obligation it has. We saw evidence of that at the Committee of Public Accounts in recent weeks where the Comptroller and Auditor General highlighted the lack of transparency - my words - in respect of how budget lines are spent right down to provision of the services we are discussing. I do not want to make political hay out of this issue. All I want is for the children in my constituency who require the services to be able to get the services, as we all want in all our constituencies. Somebody needs to come up with a plan to bridge that gap without trotting out the same lines, day in day out about recruitment issues.

For people living in the Leas-Cheann Comhairle's region, CHO 2 covering Galway, Mayo and Roscommon, only two children are waiting more than two months or three months. However, in my area, CHO 4, covering County Kerry, Cork north, Cork north Lee, Cork south Lee and Cork west, it is 500 children. I am sure the Minister is aware of this. In some places, the system can be made to work to deploy the resources across geographical locations and county boundaries if needs be or across the CHO areas so that they follow the child where there is spare capacity in one part of the system. That is what the Sinn Féin motion calls for; that is what we have all been calling for, including Fianna Fáil Deputies. If that can be made to work, that would be a good day's work.

I do not doubt the bona fides of the Minister of State, Deputy Rabbitte, in seeking to push the HSE along. Having been in government, I know what it is like to sit at that side of the table and I know what it is like to be held accountable for my actions. The same applies to us all if we are line Ministers. Sinn Féin Members will also be accountable when they are in government. I look forward to that time. We all are accountable ultimately as the makers of policy. We cannot keep hiving it off to the HSE. At some point there must be political accountability for these decisions as they affect our fellow citizens and children.

I ask the Minister for Health to redouble his efforts to bridge the gap so that we as a nation do not have 16,838 children waiting for follow on ophthalmology services and 14,619 waiting for occupational therapy. All of these figures come from the HSE's replies to parliamentary questions. In fairness to the HSE, it is extremely good at answering parliamentary questions. It will provide chapter and verse, line by line of all the details. The additional layer that I would see being put on top of that and I think we will all start asking these questions fairly quickly is: where is the expenditure to match the needs? Ultimately, that is what this motion is about.

I support the motion and I am glad it has been brought before us. Collectively, we have all been talking about this issue. I would like to take the heat out of it and let in some light if we can. I know the Minister will want to achieve much along with his ministerial colleagues to address these issues because the law now demands it. There is a corpus of law and the High Court has adjudicated on it. I am glad to see the shift in respect of what was an extremely flawed model relating to the CDNTs. How will the Minister underpin and buttress those teams across the country so that we can have that kind of complementarity between families and therapists to deliver for the child?

I welcome this motion and thank Deputy Tully and Sinn Féin for giving us the time to discuss this vital matter. It has been three weeks since the most recent motion on disability services for children and young people. Since then, things have got worse, not better. The High Court judgment has found that the 90-minute assessments are unlawful under the Disability Act 2005, affecting more than 10,000 children and their families. It was revealed that none of the 91 CDNTs were fully staffed. It has also come to light that the HSE is using an outdated database to track needs identified in assessment reports. These revelations are piled on top of the already substantial failures to properly assess and treat children with disabilities in Ireland.

Services are a geographical lottery. Children are waiting months for therapy appointments. Countless families are forced to pay privately for services and communities need to fundraise for supports the State should be providing.

Among all of this, two overarching issues need to be addressed immediately: the waiting lists for assessments and therapies, and the geographical variation in services.

The NGOs working in this area provide incredible support to families but they have also assembled research into the experiences of progressing disability services which further establishes the current failures of the system. Down Syndrome Ireland’s recent survey of 433 members, nearly one third of its members with a child aged zero to 18, found that 44% had received no therapy of any kind in the last year. Some 44% of children with Down’s syndrome received no therapy, and this is just the national average. There are regional variations, with the Cork-Kerry area, CHO 4, being the worst. Some 64%, almost two thirds of children in this survey, did not receive any therapy - no speech and language therapy, no occupational therapy, no physiotherapy – and those figures are even higher for each therapy. A survey from AsIAm last year, with 454 responses, found that 42% of families have had to wait more than two years to receive an autism diagnosis for their child, while 79% said they were not in receipt of any support from either the early intervention or school age teams. Inclusion Ireland’s recent survey on progressing disability services found that 85% of over 1,000 families have waited or continue to wait for more than a year for a service. Each one of these statistics is a child or young person who is entitled to therapies and supports. Each one is a family that is distressed and frustrated.

In response to a question of mine last week in the children committee, the HSE revealed that not one of the 91 children's disability network teams was fully staffed. As I pointed out then, a partial team is not a team. The latest figures I have for the Cork south-west community disability network teams, CDNTs, from December, show that the Kinsale-Bandon-Carrigaline team is short a physio, two occupational therapists, 0.5 of a speech and language therapist and two psychologists. In fairness to the Minister of State, Deputy Rabbitte, she has secured funding for additional staff but the HSE is now citing recruitment issues. The CEO described how recruiting health and social care professionals is a real challenge. He outlined a plan to recruit 190 staff this year but, at the same time, only one specific CDNT speech and language therapy post was advertised on the HSE website.

Working conditions and strains mean the recruitment and retention of staff is difficult. The treatment of student healthcare staff is very poor, and student nurses, midwives, occupational therapists, speech and language therapists and others receive very little or no pay. There needs to be a larger review of how the HSE attracts and values clinical staff. However, there is a very real chance that teams staffed at the planned levels will not address the significant challenges. Even when the HSE was carrying out the much shorter 90-minute assessment, there were substantial waiting lists. The HSE will now have to return to the proper assessment of need clinical process, which takes up to 29 hours on average. This will obviously require more resources and staff time so will the HSE be recruiting more clinical practitioners?

The HSE basically told the children committee that this will result in substantial impacts on the provision of therapies. It contends that meeting its legal obligations on assessment, which it has failed to do for more than two years, will take away from therapeutic services. This is a truly terrifying prospect for families. According to the HSE position last week, things are going to get much worse for children and young people with disabilities. The Minister might clarify in his closing response whether the current planned staffing levels will have to be adjusted to cater for the provision of full assessment of needs.

Communication is another major issue for families. Rare and infrequent contact from the HSE only adds to the worry of parents. Down Syndrome Ireland’s survey found that 40% of respondents had no communication from the HSE in the past 12 months. The letters which do arrive are described as system focused rather than child and family focused. Families need clear information on when their child will receive services and supports. Inclusion Ireland has recommended that an external agency or parent steering group could “parent proof” letters and communication to families to avoid further distress and confusion. Often, it is online groups and informal networks which offer the best advice and guidance for families, not the HSE.

This situation also highlights the need for family forums. Despite the aspiration towards making disability services more family-centred, it is not the case. Family forums are supposed to be a part of progressing disability services but these forums are not functioning. The Cork parents' advocacy network contacted me after repeated failed attempts to meet with the head of disability services for counties Cork and Kerry. Many family forums in CHO 4 have yet to even be established. Can the Minister provide clarity on when all of these forums will be established and the plans to support their effective running as meaningful measures?

Parents are distressed and angry; they are tired and despondent. Every service, every appointment, every piece of equipment is a struggle. As well as the 100 other things a parent has to worry about, they lie awake at night anxious about the therapies and supports their child is not getting and the impact it will have. Parents save and sacrifice to get private appointments because they know that public service is inadequate. They are exhausted. One parent in the Down Syndrome Ireland survey summed up the situation for so many families: “The whole process around PDS has been extremely stressful and the fears I highlighted have become a reality and my child is left without supports at an age when there is so much potential to support her if right supports are given.”

Part of the problem is the fractured nature of services. Therapies are with this Department, transport with another and school supports with another. Each one has a different form, a different phone number, a different policy. Parents are overwhelmed with the number of offices and bodies with whom they have to interact. Today’s motion rightly calls for a joined-up cross-departmental strategic workforce plan across health and social care services. Families, parents and grandparents should all know they will be supported. They should know that the State and HSE have their backs. Instead, they have to fight ten different offices for basic services. The changes required here are massive and radical. They need substantially more staff and a new way of supporting children and families. However, these improvements will be hard won. The 90-minute assessment of need was opposed by clinicians before it was introduced. Families and advocates quickly highlighted its shortcomings. A Dáil motion condemned the practice but it took a High Court case for the HSE to implement correct procedures.

Another worrying indicator is the absence of the Minister for Health in these debates. I am glad he is here to contribute to this one as it is a very pressing issue that affects many families. Especially after a major High Court ruling showing how the HSE failed more than 10,000 children, it is good to see him here. I am not sure what his priorities are in his brief but, so far, disability does not seem to be among them. That in no way detracts from the leadership and dedication the Minister of State, Deputy Rabbitte, has shown in this area. However, it is clear from the challenges facing the health service in this area that the senior Minister needs to be more involved and present.

Progressing disability services was supposed to replace the previous system where accessing services often depended on where people lived and how rich they were. The HSE has unfortunately replicated this system. It is still a geographical lottery and families that can afford it turn to private providers, while those that cannot have to wait, potentially for years. Children and young people are entitled to the services they need. That is not only our commitment under international law; it should be our moral code as a society. Families and communities are doing all they can. It is time the HSE and the State did their part as well.

I wish to share time with Deputy Paul Murphy.

Is that agreed? Agreed.

I commend Sinn Féin on this very important motion. We have debated for a considerable amount of time over the period I have been in this House the issue of disability services for children. From my point of view and that of my colleagues, we have always tried to be constructive rather than destructive and tried not to make politics of it. It is sometimes difficult not to make politics of issues but, on this issue, we try to be as constructive as possible.

This issue goes back a considerable amount of time. As with many other issues, there are legacy issues in regard to how we treat children and how we treat public health in this country. What we are talking about is children being denied very basic services and very basic civil rights, in my opinion and, I believe, in everybody else's opinion. Once those services are denied, a child's development can be greatly affected in regard to life expectancy and so forth.

What we had in the past 17 years was a quite incredible situation where the Government was breaching its own laws around the Disability Act.

It got more absurd when families trying to access these services had to go to the High Court. Two hundred families went through that process to access basic services. That situation got even more absurd when a High Court judge a couple of weeks ago said the standard operating procedure was not compatible with the Disability Act and the Government is basically breaking its own law. Families have to go before the judge in the High Court to say they are not getting the services they need. It is a ludicrous situation. Will the Minister review the Disability Act 2005? It was passed 17 years ago and was, in its essence, a good Act. It gave a timeframe of six months within which families could get an assessment of needs. We would all say that if people could get those services, we would be doing well. The reality is so different.

As I have said many times, when somebody comes into my office and the first thing they say is about assessment of needs, my head drops to the ground because I know how useless I am in that situation. That family is going through this mechanism and has to wait years. If families are coming to Deputies, then the system is completely flawed. They should never be coming near Deputies. They should be coming through the HSE early intervention team and using the procedures in place to get those services. Families and children are denied and left to their own devices. They sometimes have to go private, which is expensive. Even if they go private now, there are huge waiting lists. The situation is as grave as it can get, and is coupled with the situation in relation to the Disability Act. In real life, families have to wait up to three and a half or four years for basic services, such as speech and language therapy or occupational therapy. You would want to have a heart of stone when somebody says their child who is four will be seven and a half before they get the services. This is a wealthy country. It is not poor by any means and should have the provision to treat children in a civil way. Will the Minister review the Disability Act because, by my reckoning, it is not fit for purpose?

I thank Sinn Féin for using its time on this issue again. It is ironic. In the past couple of months every time the Opposition demands a debate on something, the Taoiseach, in particular, likes to say the Opposition has all this Private Members' time to use and if Opposition Members want a debate on Yemen or the national maternity hospital, they should use that time. If the Government and the State agencies at the HSE did not break their own law and force Sinn Féin and the Opposition to use Private Members' time to raise the same issues repeatedly to pursue the basics for children with special needs to get what they deserve and need instead of being messed around, and if the brains of the HSE were put to resolving problems people have and providing assistance people need rather than fiddling around with the figures to try to cover up what was going on, then the Opposition might have more free time available for some of the other issues we want to debate. This should not be necessary.

For the second time in a month, the Government will pass an Opposition Private Members' motion on children with special needs and the assessment of needs. Okay, it is better that it pass it than that it does not. That is grand. However, what the families and parents want to see is not just the Dáil passing motions. They want us to pass motions to put pressure on the Government to do something about the issue. They want concrete action. There are concrete demands in the motion they want to see happen.

There is no excuse for Ireland not to sign the optional protocol. The only reason not to sign it is to avoid providing people with a route to ensure their rights under the UNCRPD can be vindicated. We need to see that immediately so that if the Government does not do what it is meant to do, people have a route to vindicate their rights. We need a full and transparent publication of all the waiting lists so we can see the truth of what is happening. That truth is being consciously covered up and distorted by the HSE, contrary to the law as it currently exists. Then - it is not rocket science - we need investment to ensure kids get the support they need. The latest figures I saw show that 34,000 children are waiting for community health supports, including speech and language therapy, occupational therapy and all the therapies people need to access.

Every time I meet families on this issue, it strikes me they have enough going on in their lives and enough pressure in trying to support and do everything they can for their children. Then the Government and State leaves them with no alternative but to spend a huge amount of time fighting for things that should be basic rights. I pay tribute to all those involved in activism around this issue despite the fact they have no time for it and to those who take the State to court, all the way up to the High Court, to vindicate the rights of their children. They should not have to do it.

I will raise one case illustrating the criminal failure by the State of children with special needs. I was talking to a woman yesterday. She was happy for me to use her name, Sharon Saunders. Her child has Down's syndrome. I have three refusal letters for 2020, 2021 and 2022 wherein everybody accepts he needs a space in a special school but, year on year, he has rejection letters from the school because there is not enough space. He is on a waiting list and, year on year, it never happens. That is no criticism of the school. It is a criticism of the insufficient investment in our education and healthcare to ensure children get the support they need. We pay all this lip service to early intervention, but the practice is extremely late intervention. The consequence of the lack of investment is that this 12-year-old is sitting in a mainstream fifth class primary school at the back of the class getting assistance from a special needs assistant, SNA. The school is doing everything it can to support him but it is not where he needs to be. He needs to be in a special school. That is the best thing for him but we have failed to invest in resources to ensure the spaces are available. That is a political choice. A different political choice can and should be made.

Debate adjourned.
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