Skip to main content
Normal View

Dáil Éireann debate -
Tuesday, 8 Mar 2022

Vol. 1019 No. 3

Assessment of Needs for Children with Special Education Requirements: Motion (Resumed) [Private Members]

Debate resumed on the following motion:
That Dáil Éireann:
notes that:
— early intervention is essential to meet the health and educational needs of children with disabilities and additional needs, in order to improve their quality of life from a young age;
— the Disability Act 2005 provides that an Assessment of Need (AON) must be commenced and completed within six months;
— section 8(7) of the Disability Act 2005 requires an AON to state determinations on whether the applicant has a disability, the nature and extent of the disability, the health and educational needs of the applicant, and the services required by the applicant;
— the AON process took an average of 29 clinical hours to complete before the introduction of the Standard Operating Procedure (SOP) which has limited the clinical time to 90 minutes, a reduction of 99.95 per cent in clinical hours for an assessment, which the Irish Human Rights and Equality Commission has said "undermines disability rights";
— while AON waiting lists have been reduced following the introduction of the SOP and Preliminary Team Assessments (PTA), the professional associations representing the therapists and psychologists providing these services has said that the PTA is "not fit for purpose", "the direct opposite of what is intended by the Disability Act, 2005", "dilute professional standards of assessment for vulnerable children in need" and "results in the child being referred onto another waiting list for further assessment. This further assessment does not fall under the Disability Act so there are no statutory obligations for these assessments to be completed in a timely manner";
— section 13 of the Disability Act 2005 mandates the annual reporting and publication of aggregate unmet need for the purposes of identifying gaps in service provision and the resources required to meet need, yet no report has been published since 2009;
— 212 legal actions were taken against the Health Service Executive between 2018 and 2020 in relation to overdue AON, amounting to €701,000 in legal costs for the State; and
— in October 2021, the Minister of State with responsibility for Disability advised the Oireachtas that the children's disability teams were short 400 staff;
further notes that:
— there are long waiting lists for access to occupational therapy, speech and language therapy, and psychology services, including:
— 18,303 children on occupational therapy waiting lists;
— 9,532 children on psychology waiting lists; and
— 8,167 children on speech and language therapy waiting lists; and
— a survey conducted by AsIAm in June 2021, "Every Child Counts: A Report into Autistic Children's Access to Healthcare in Ireland" found that 80 per cent of parents and guardians have had to wait a year or more to receive an autism diagnosis for their child, and 79 per cent said they were not in receipt of any support from either the Early Intervention or School Age-Going Teams;
condemns the fact that:
— in many cases, parents are forced to pay privately for an AON and associated therapies and interventions for their children, in order to access the necessary supports and interventions; and
— the current situation represents a gross and unjustifiable inequity in healthcare and education provision, where children whose parents cannot afford to pay privately, take legal action or who live in areas with long waiting lists, are at a significant disadvantage in accessing the supports which they need and deserve; and
calls on the Government to:
— cease using the SPO to skirt its responsibilities, under the Disability Act 2005, to children in need of support;
— provide appropriate, comprehensive, and clinically ethical AON in line with best practice as outlined by the professional associations representing occupational therapists, speech and language therapists, and psychologists;
— ensure prompt access to a diagnosis where required to access specialist health or education services and further statutory entitlements;
— immediately inform the Dáil of the measures it intends to take to ensure that all children receive a comprehensive AON within the timeframe set down by the Disability Act 2005, and to ensure that these children have real access to the services which they need;
— publish a costed and timebound implementation strategy for the Disability Services Capacity Review which includes targets to meet staffing needs;
— publish a cross-departmental strategic workforce development plan to train, recruit and retain enough health and social care professionals;
— publish all waiting lists for AON, further multidisciplinary assessment following AON, the number of open cases per Children's Disability Network Teams (CDNTs) and the number of children with and without an Individual Family Support Plan, as well as lists for access to services and interventions which are past their due date;
— establish CDNTs in full, including the establishment of governance arrangements with a family forum attached to each CDNT;
— recommence reporting of data and publication of reports pursuant to section 13 of the Disability Act 2005, to provide an evidence base for future planning of service capacity for unmet need;
— immediately ratify the United Nations Optional Protocol to the Convention on the Rights of Persons with Disabilities;
— amend the Disability Act 2005, to provide for a multidisciplinary, needs-based approach to AON as recommended by the Ombudsman for Children's Office in the October 2020 report entitled "Unmet Needs: A report on the challenges faced by children in Ireland who require an assessment of their needs"; and
— require the Disability Appeals Officer to apply for relevant enforcement orders where there are breaches of the Disability Act 2005, to avoid parents having to take lengthy court cases to vindicate the rights of their children.
- (Deputy Pauline Tully)

The Government has all but abandoned its responsibilities for children with disabilities. It will not even publish how badly it is failing to meet the crisis. It uses doublespeak to hide how badly it is doing. It shuffles children around and puts them in different categories to make it look like progress is being made. It is dishonest and deceptive. The way we are warehousing these children instead of investing in services and getting them the therapies and assessments they need is immoral.

All the sleight of hand by the Government and HSE will not change the reality of 8,000 children on speech and language waiting lists, 9,000 waiting on psychology and 18,000 waiting on occupational therapy. We are failing these children and causing them long-term harm. The Government must fulfil its obligations under the Disability Act and we cannot have families being forced into taking legal action so their children can get an assessment or access to care. We cannot deny vulnerable children their rights any longer.

Without an assessment or early intervention, the quality of life for a child with additional needs regresses. There is no early intervention in this State, not when waiting lists for urgent interventions by school age teams take long months or even years.

We are making the lives of families a misery by forcing them into legal action or to pay for costly private assessments, just to try to get their child on a waiting list for care. What has been the Government's response to assessment waiting lists? It has slashed the time that a child gets in an assessment, when he or she finally gets that far. All a child gets now is 90 minutes, when it used to be 29 hours. We are short 400 key staff across the disability teams. A Minister stood here in October and told us that not one child in my area of CHO 7 was waiting for an assessment of need. The HSE told me at Christmas, only a few months later, that 1,800 children had not even reached stage 1 of the process in CHO 7. That is another example of the doublespeak from the Government.

I thank my colleague, Deputy Tully, for bringing forward this motion on assessments of need for children with special educational requirements. Back in October 2020, the Ombudsman for Children's Office, OCO, published a report, Unmet Needs, which set out the challenges experienced by children with additional needs requiring assessments. The report highlighted the violations of the rights of children with additional needs and delays to assessments. The HSE is obliged to commence a full assessment within three months of a child's application and this must be completed within six months. In most cases, this is not happening.

The length of time children are waiting has forced families to go down the private route and to pay for an assessment, as many fear their children are being left behind by this Government. For other families, the private route is not an option. Why is it that the parents of children with additional needs must fight tooth and nail to get their children what they are entitled to? They must fight for housing, school places, special needs assistants, SNAs, school transport, speech and language classes and carers allowance. They must battle for any and all kinds of assistance. Yet the biggest fight they face is getting what they are entitled to from the State. In the context of the Mind the Gap report, Dr. Niall Muldoon, the Ombudsman for Children, stated that:

It is high time that children with [additional needs] and their families stop having to battle to overcome barriers. Our laws and policies must serve all of our children and allow them all to access the best education possible. It is our duty to empower them to be the best they can be and the structures must be there to support their development. It is high time for the State to lead, not impede.

In October 2021, the Minister of State told the Oireachtas that there were more than 400 staff shortages in children's disability services. Is this going to be addressed? This must be a priority for any Government. Many parents are tired and exhausted from fighting the system to get their children what should be a given in any kind of society. We are not much of a society if we do not look after children with additional needs and parents.

I thank my colleague, Deputy Tully, for all the work she has put into this issue in her ongoing work with parents. It is important and she has proved to be an important voice for children with disabilities and for their parents, and I thank her for that. I do not doubt that the Minister of State wants to do something about this situation. She knows about the waiting lists and about the parents, because if they are contacting me and my colleagues about these issues, they are also contacting the Minister of State. I am also aware that she knows each and every case. When parents look at their children and see that something is not quite right, perhaps because they are not behaving in the way their siblings might, they know something is wrong. That is where the battle starts. The parents battle and battle.

I listened to the Minister of State's colleague who said that she wants suggestions and some solutions. We need a new autism strategy and we need it urgently. We also need a workforce planning strategy. The Minister of State knows places do not exist to train speech and language therapists, psychologists and all the other disciplines we require across the board. We need proper integration between third level institutions and the HSE, but it is not happening.

The Minister of State knows the craziness in this regard. Let us take the example of a speech and language therapist who gets the wonderful news that she is pregnant and is going to go on maternity leave. When do we recruit for that position? We start the recruitment process when that speech and language therapist leaves her post and not on the day it was announced. It is the same situation when people hand in their notice. Riddle me that situation.

They do not go on maternity leave in disability services.

They do not cover maternity leave. That is a disgrace in itself. It is not equal in all areas either. When people come from rural areas, like where I come from in Mayo, in CHO 2, things do not work together. Somebody must be responsible in the system for making things happen and making things work together, but that is not being done. The Minister of State has responsibility for this portfolio and I want her to hold people accountable in the HSE. I will finish up because there is another speaker.

Perhaps Deputy Conway-Walsh is being given the slot because it is International Women's Day.

Millions and millions of euro are being spent here, but that is no good to the children and parents waiting tonight.

I thank Deputy Tully for all the work she has done on this issue and for taking the time to help some of my constituents and to talk to them on the phone. This is a situation where many parents have come to me when they have not dealt with the system before. Even people who are able to afford private care are shocked by the lack of any services available. These parents struggle to get assessments and have to go private. They are on waiting lists. One of the people they were dealing with, a speech and language therapist, told them that the recommended caseload was 25, while the actual caseload to be dealt with was 400. There must be workforce planning in this regard because the stress this situation has placed on parents of children has led to marriages breaking up and to making a difficult situation even worse. A structure must be put in place to make this system as effective as possible for the children. Early intervention can make the difference between a full life and a significantly diminished one.

We have spoken before about the issues that affect children with special educational needs and this situation is getting more grotesque. The courts are getting more crowded with cases that have been taken by desperate parents. Mr. Justice Meenan recently questioned whether such cases were the best use of the resources of the justice system, given how many are settled, which is practically all of them, and costs awarded. While constrained by the separation of powers, the judge has a point. Cases may be settled, but the proverbial situation is one where no cases would have needed to have been taken at all if there had been proper provision of services instead.

That would avoid situations like the one we saw recently in Kerry. As part of the scandal there concerning the child and adolescent mental health services, CAMHS, children who needed special educational supports were left waiting. They were sometimes prescribed antipsychotic medication when they were suffering from social anxiety and issues like that. That harmed those children and compounded the developmental issues they were experiencing. Permanent damage was sometimes caused to them, cutting off what could have been a fruitful developmental arc if they had received the proper supports. In cutting corners and pinching pennies, the Government has created hostages to fortune. It is, however, the lives of these children we are dealing with. Urgent action in line with the steps outlined in our motion is required.

I thank Deputy Tully for the work she has put into this motion. In my work, several things strike me when I meet the parents of children with additional needs. I refer to the exhaustion and the frustration, as well as the challenge of dealing with a diagnosis that can be quite difficult. It is a learning process. Parents can be dealing with a diagnosis they did not know anything about and which they must endeavour to understand better. They must try to understand the terminology involved and then empower their wider family. Then, they must be at least a part-time campaigner, if not a full-time one, to wage war against the State. That is what is so disappointing about this situation.

Parents live their lives as citizens of this republic and do everything they feel is right. They pay their taxes, obey the law and live a good life, but all of a sudden they have a child in their care who they love deeply and they can see the State is coming up short. That leads to a major level of resentment within a family and it can feel as if nobody is really speaking, caring, advocating for their child or empowering their child. It leads to incredible issues within the family unit.

I have come across families who are absolutely exasperated and exhausted. It feels as if wherever we turn in Irish society, other people are stepping up. The average GAA club takes on all-star sections to encourage children with additional needs to play Gaelic games. I know of initiatives to make towns and village centres around the country autism-friendly and we are trying to encourage that in Raheny and Donaghmede in my constituency. There seems to be an awareness and understanding among lobby groups of the need to listen better to organisations like AsIAm, Inclusion Ireland and others. There seems to be a uniformity of approach to empower, understand and listen to families and the likes of the Ombudsman for Children, who spoke today.

The one area where we feel there is a lack of evidence of stepping up, unfortunately, is with the State. The Ombudsman for Children remarked today about the fact that more than 34,000 children are waiting over a year for community health services, which is a stunning statistic. When I meet people who work in the HSE, they speak of the retention and recruitment issue, which has been referenced in the Minister of State's remarks. However, the Labour Party made suggestions last April in a Private Members' motion that was, again, accepted by the Government. It advocated that the State should bring forward a national autism strategy. The Government is not opposing this evening's motion and it did not oppose our motion last year. Unfortunately, the action is lacking. I can go to services in my constituency, such as ABACAS school in Kilbarrack, where I can see the conditions that children are expected to learn under. When I meet the parents, they feel that once again, for whatever reason, their children are not at the top of the political priority list.

I understand the Minister of State saying this is not a resources issue and there are other factors. This is not a new problem and it has been evident for a number of years. Parents have been trying to access school places in my constituency. When they do so, they are handed a list of schools by the special educational needs organiser, SENO, with the State again stepping away from the responsibility to find a school place. A parent has to go to school after school, even 17 schools in one case, to try to find a school place for a child. A school place in Drogheda was suggested for a child despite the child living in Donaghmede. There is an absolutely unbelievable type of expectation on parents who again are coming to terms with a diagnosis, terminology and challenges within the family that are absolutely exhausting them.

I believe we can agree that we should have a vision of a republic where any child with a diagnosis, a need or a challenge would have the State enveloping the child with such compassion and the family with such empowerment that the family would feel proud to live in this country. They should be able to say to anybody they know in another country that when they got the diagnosis, despite it being challenging, there was an immediate assessment of need and interventions. They should be able to say the school was absolutely resourced to accept the child and build his or her education. They should be able to say the community in which they live knew exactly how to interact with the child and family. They should be able to celebrate eventually because they are enabled to learn so much from the child. That could be the vision that we could achieve collectively. What happens, however, is that a family gets a diagnosis and it is a devastating moment in life because they know the State will not help. It is not a small decision for a family to end up in court and many of these families have never stood in a courtroom before. It is not something that comes naturally to them. How depressing must it be to walk into a courtroom and see the symbol of the country over the judge's head and know this republic is letting you down?

Last April we put forward a motion on a national autism strategy and we were trying to bring all the different elements of government into one movement and make things better. This was so families could feel as if they could point to a strategy. Again, this is a political point. When we have arguments over tax and spend in this Chamber, the Ministers of the Government justify tax cuts to the tune of €500 million. I always think of these families when that happens. The Minister of State may say it is not about resources or funding but it comes down to that at some level.

This is not a new problem or something that has just arrived today. I have been dealing with it for at least three years. I want the Minister of State to consider again a national autism strategy and make a commitment that we can drive down these numbers. We must be able to say to the families of this country that they do not need to be exhausted or work as campaigners because this State will absolutely support and empower them. I spoke about the ABACAS school in Kilbarrack, and nobody in the Government should feel the conditions there are acceptable. The Ombudsman for Children, the Opposition, lobby groups and others are stepping up. I have mentioned GAA clubs and community initiatives. They all see across society the value in understanding and empowering. It is deeply frustrating when the State does not appear to understand it too.

I thank Deputy Tully and Sinn Féin for raising this very important matter. The considerable waiting lists for assessment of need and the therapeutic interventions they should lead to form one of the primary barriers faced by children with disabilities and their families. The Ombudsman for Children highlighted this disgraceful position in his 2020 report, Unmet Needs, and I will quote from it. It states:

We have received many complaints from distraught parents whose children have been on a waiting list for years to access an assessment of need for their child. Many have found that once their child is assessed, they struggle to get any or all of the services recommended to help their child talk, move, learn and grow.

We are all aware of this and I know all Members are contacted about this issue weekly. It is a continual topic at the disability matters committee. Our health services are failing children and young people. Not only is this position a breach of their rights but it will have a lasting impact on their capacities across their lives. The earlier an intervention, the more effective it is and the better it is for the individual and society.

The waiting lists for assessment of needs should be of utmost concern to every Member of the Dáil. Assessment of needs is supposed to be the first step in a process providing children with a range of therapeutic and educational supports that they need to live as independently as possible. It is a foundational intervention that has incredibly beneficial impacts on children and young people. A proper wrap-around system of health supports to assist the development of children is one of the most powerful and empowering interventions that we as a society can offer. However, if the first step does not happen, if it is delayed or it is not performed fully, children and the families concerned will have already been failed. It has knock-on effects.

Delays of months for young children can have profound impacts. Parents know this. They are incredibly worried and stressed. Those who can afford to do so go privately for providers of assessments and therapies. I use the phrase "those who can afford to" cautiously. These are not necessarily wealthy families. They are ordinary people who can manage to save enough money through hard work, sacrifice and borrowing to access services the State should be providing. Then of course there are the families who cannot afford it no matter how much they save or borrow. There are families from migrant backgrounds or in direct provision who cannot navigate the systems nor afford them. There are whole groups of children who are being left behind by successive Governments. No one wants this situation. We all know it is disgraceful, yet it is a daily reality for many families across the country.

A worrying aspect of the situation as noted in the motion is the technicalities being used to work around the requirements to provide full and proper assessment of needs. The duration and content of these assessments should be clinically defined by best international practice. We know that before the introduction of the standard operating procedure, the assessment process took an average of 29 clinical hours to complete. Now it is nowhere near that. A child would be lucky to get even a fraction of that in therapeutic hours in west Cork, not to mind an assessment of that calibre. It would seem that the administrative targets are being given priority here. Children's assessments and treatments should only be decided on the basis of best clinical practice. Unfortunately this situation sums up reality for so many children and adults with disabilities in Ireland. Disability rights are in name only. The rights to healthcare and education are being failed daily.

I am in contact with numerous families in Cork South-West and beyond who have to fight to get access to therapies and learning support. Families have to travel hours to get occupational therapy or speech and language therapy appointments. They have to wait around for cancellations of those appointments even, and fund-raise for special needs assistants. They have to rely on community supports and donations to get suitable vehicles. Despite Ireland eventually having ratified the UN Convention on the Rights of Persons with Disabilities, there is a massive gap between the law and the lived reality of individuals and their families.

The motion calls for immediate ratification of the optional protocol to the convention. I have been pushing for this repeatedly at the Oireachtas Joint Committee on Disability Matters and in this House. The protocol is an essential mechanism to hold the State and State bodies to account in the provision of services. The consistent and persistent failure to realise the UN convention points to the glaring need for the protocol. Sinéad Gibney, the chief commissioner in the Irish Human Rights and Equality Commission, stated:

'Optional Protocol' is a technical term that unfortunately does a disservice to its meaning and significance, and which masks the urgent need for action for people with disabilities and our society. The Protocol is about empowering people with disabilities.

While the language is technical and it can seem divorced from everyday life, this is an incredibly important thing to help strengthen the rights of people with disabilities. Far from being optional, it is a vital measure relating to implementing the convention. It provides more local remedies and removes discriminatory laws and practices.

At the Oireachtas Joint Committee on Disability Matters, experts including the UN Special Rapporteur on Disabilities and the Irish Human Rights and Equality Commission have clearly said that the optional protocol can be ratified immediately. It is a political decision. The Government can ratify it tomorrow if it chooses. Currently it seems there is an institutional aversion to the protocol as a tool to hold the State to account. It took over ten years for us to ratify the UN Convention on the Rights of Persons with Disabilities. Individuals, communities and advocacy organisations are deeply concerned that ratification of the protocol is also years away.

Ireland is supposed to have a social model of disability, an approach which recognises how individuals are disabled by society, for example, by barriers put in place such as inaccessible buildings, needlessly complicated forms and a lack of Irish Sign Language services. However, the State still seems to have a medicalised model of disability that defines these areas in terms of physiology. The primary medical certificate is a prominent example of this. The use of medical certificates and stringent criteria is not only antiquated, it is actively obstructing the independence and rights of disabled people. We need a system that is less concerned with exact medical and physiological issues and more with the individuals and how they can be empowered to live as independent a life as possible. We all know of cases where families have to fund-raise for adapted cars and vans for young children with disabilities. The State is failing these children and adults who are just looking for a fair shot at being able to get an adapted vehicle. Until the cultural understanding of disability is changed within all Departments and State bodies, these barriers will remain. Disabled people will still be failed and we will still have to fight for basic services.

Before Christmas, the Oireachtas Joint Committee on Disability Matters heard from a family who had moved from Australia to Ireland. In Australia, their child received two hours of occupational therapy, one hour of physiotherapy, one hour of speech and language therapy and one hour of vision therapy every week with an extra intensive therapy period every three months. The family moved to Galway. Their daughter received considerably less but still got early intervention including regular physiotherapy, hydrotherapy, occupational therapy, speech and language therapy and even family respite. The family then moved to Cork and the level of service plummeted. Like many other families they have had to pay privately for physiotherapy, occupational therapy, speech and language therapy and for carers because none of those services were available publicly in Cork. Not only is Ireland providing significantly less support to children than other countries; there is a massive variation in services within Ireland. It is literally a postcode lottery. This is a terrifying reality for families in Ireland. The motion outlines vital actions to realise the rights of children and provide them with the care they need. It is essential that this motion is passed and, crucially, acted on by Government.

I have 50 seconds left. One of the issues I raised last week with the Minister for Education, the Minister of State with responsibility for special education, the Taoiseach, the National Council for Special Education, NCSE, and so on was in respect of our early intervention classes. It was flagged that the NCSE had told a school in Cork South-West that its early intervention class was to close, that this was the national policy and that the classes would be phased out in favour of the access and inclusion model. When I raised it with the NCSE it was very evasive and that made me more worried. When I raised it with the Minister for Education she did not answer the question. When I raised it with the Taoiseach who, to be fair, cannot know every single thing that is going on in every Department, he seemed sure that would not happen. When I raised it with the Minister of State with responsibility for special education at the committee, she said it would not happen.

Based on all the previous things before that, I want to flag it again with the Minister of State, Deputy Rabbitte. The access and inclusion model is not suitable for many children who go into our early intervention classes. We obviously need more of them based on the waiting lists. One of the things the NCSE and all those Ministers were saying was that it was a matter of providing them where they are needed but in that case it was needed. There were staff in place, students enrolled and a waiting list but they were taking it away. That decision has been reversed which is welcome. I want to flag it with the Minister of State to ensure it cannot happen anywhere else.

I am sharing time with the Deputies beside me.

Four and a half minutes for you----

No, you do not tell me how many minutes. You threw me the other day when you did that. I will be in control of my time.

Sorry about that, Chair. I do want to welcome the motion and the issue Sinn Féin is highlighting. One of the main demands, that we should scrap the standard operating procedures, is one we would like to echo. This is a con job designed to massage the figures and give the impression that something is being done about the scandal that is the assessment of needs and how the State treats its most vulnerable. Since I came into the Dáil in 2016, I and my colleagues here have had countless constituents coming to us in exasperation and despair about trying to get their children the care and supports they need. The first obstacle in a long list is the assessment of needs process. Those who are forewarned can simply go private or, most often, struggle to do so. Those who cannot go private will languish on waiting lists. When we have submitted parliamentary questions on this issue, we have received astonishing replies from the HSE. Dates were set at a year or 18 months into the future for an assessment.

Then there was the whizz some genius decided on, namely, the standard operating procedure, to give the appearance that something is being done when, in fact, it is only an added process and obstacle - in effect, a queue to get into a queue. We know the consequences and trauma caused by this and have done so for many years. We know there have been serious staff shortages for years.

When we asked for the data on the number of children in each CHO and the time they were waiting to access the services identified in the assessment of needs, the HSE said it does not compile that information. This is extraordinary. All the statistics and all the supposed progress is about identifying the needs children have, not meeting those needs or supplying the services. The explanation given in the responses to parliamentary questions for the rationale behind the standard operation procedure needs to be challenged. The claim is that it is for consistency and that assessment officers and clinicians were "erring on the side of requesting a wide range of assessments in as short a timeframe as possible" because they were under pressure from the legislation.

It is worth comparing that bureaucratic answer with the experiences of a friend of mine. Lynda is from Tallaght and has a son called Sé who is nine and has Down's syndrome. In an interview with The Irish Times last year, she explained that he has had sporadic supports over the years. She said:

[Sé] was referred for an autism assessment three years ago - it hasn't even been acknowledged. There is maybe one occupational therapy session per year. No speech and language for the first few years and then a block of six hours before he's signed off the system. When I started fighting for services after Sé was born, I was told I have unresolved childhood issues. Instead of working together, it's about blame. We've spent all our savings on private therapies and we're in a precarious position now.

In the same article, Dr. Irwin Gill says of the current process:

It's not a meaningful assessment; it does not help children and merely moves them to another waiting list for a more useful assessment, for which there is no statutory time limit and therefore no legal recourse. The prevailing opinion is that this is a cynical attempt by the HSE to protect itself rather than act in the interests of children.

Clinicians on the ground reiterated this, with one of them saying they "feel disheartened and many feel they cannot stay in the HSE if this is the future". Another clinician said:

It's against all our ethical practices. We cannot assess in 90 minutes as to whether or not a child has a disability, but if we say they don't, they won't get services. So most of us will probably recommend further assessment and say we suspect a disability. I feel despondent.

One of the serious questions that arises is why this crisis has been allowed to grow. Despite all the rhetoric from the Minister for Health and his predecessors, the HSE has overseen catastrophic failures to provide the services needed by our children. The assessment of needs issue shows again the deep crisis in our national health service in general and the attempt to suggest that somehow these issues are complex and inexplicable. In fact, the roots of the problems are the multiple crises in the health system stemming from the fact we have supported and maintained a two-tier health system for years - a crisis-ridden public system and an ever-increasing and largely profitable private system. This is the reason the private system is being grown. There is a vested interest in private healthcare precisely because we have a dysfunctional public healthcare system. There is a dysfunctional public healthcare system in order to promote the private system. They are two sides of the same coin and any attempt to deal with one without the other does not understand this issue and the attempt will flounder. We need a one-tier national public health system that understands that when we force nurses or public health doctors out on strike or drive them out of the service or the country because the conditions are so bad, we are deliberately undermining the provision of public health and facilitating the increased need for private, for-profit healthcare.

I thank Sinn Féin for bringing forward this motion. It is striking the length to which the State has gone to try to cover up the reality of the extremely long waiting lists for children who have special needs. It is ingenious of the State to try to do so. This stands in contrast with the absence of similar ingenuity matched with resources to provide children with the care they need. If a little of the effort that went into covering this problem up went in, matched with resources, to providing the services, therapy and so on that children need, we would be in a much better place than we currently are. As everybody here knows, the scandal is that we have families who should be able to focus on their children instead having to focus on fighting for things that should be a basic right. They have to take court cases against the State and contact Deputies and Ministers to try to get something for their children. For those who can afford it, and the point was well made earlier that often they can barely afford it, they are told to go private.

I spoke to a woman, Kate, earlier today, whose son, Connor, has verbal or oral dyspraxia. Today, finally, he got a public assessment of needs, after waiting eight months, but it will be 12 months before he begins to get the therapy he needs. He will get it once a week for six to eight weeks and then it will stop for a period of months, after which he will get it again and it will stop, and so on. It will be done in blocks, whereas all the best international expert evidence says it needs to be done regularly and continuously and there must be early intervention. People like Kate and Connor should not be failed by the State in this way.

The motion states that the Government must "immediately inform the Dáil of the measures it intends to take to ensure that all children receive a comprehensive [assessment of needs] within the timeframe set down by the Disability Act 2005". The Minister of State says the Government will support the motion and is sitting there nodding at all the criticisms people are raising. This is really cynical stuff. Is she going to inform the Dáil immediately of the measures the Government intends to take to ensure that all children receive a comprehensive assessment of needs within the timeframe set down in the 2005 Act, or will she do what the Government has done with similar motions last week, the week before and the week before that, which is to vote for them and then keep on doing the same thing? People will be watching closely in that regard.

As the motion points out, a survey conducted by AsIAm in June last year, Every Child Counts: A Report into Autistic Children's Access to Healthcare in Ireland, found that "80 per cent of parents and guardians have had to wait a year or more to receive an autism diagnosis for their child, and 79 per cent said they were not in receipt of any support from either the Early Intervention or School Age-Going Teams". Examples have been given of how parents who cannot afford it have had to borrow money to seek private treatment. People who are not in a position to do so have had to go on the desperately long waiting lists and watch their children having to wait and fall behind. Even when a child is diagnosed, multiple obstacles remain, such as a shortage of clinicians, including occupational therapists, and teachers being asked to cope with insufficient training. All of this is extraordinarily stressful for parents.

In Kilbrittain, there was a successful campaign by parents and teachers to stop the closure of an early intervention preschool. The NCSE was forced to back down by the campaign but has refused to clarify whether closure of such preschools is now part of its policy, which would amount to cost-cutting under the cloak of the access and inclusion model. Will the Minister of State clarify the position in this regard and rule out such a policy? If she is voting for this motion, she needs to act, as she will be called on to do.

I thank Deputy Tully for bringing forward this important motion. As members of the Joint Committee on Disability Matters, she and I have heard at first hand the experiences of witnesses who have come in over the past two years, including parents of children who gave harrowing accounts of what they have to endure when they discover their child has a disability or special needs.

As a Deputy representing Galway East, I have had many parents in contact with me over the past six years, or since I was first honoured to be elected to the Dáil, to relate the same experience.

Parents first need time to adjust to the fact that their child might have a disability or special need. It is a traumatic experience no matter what else happens. The next stage is parents' realisation, as they get involved in the whole process, that they must fight tooth and nail for everything their child gets. They have to fill out forms repeatedly and prove time and again that their child has a special need. They try to get the services their child needs and deserves. The initial assessment, assessment of need and pathway going forward are all in a fog. The parents do not know where they are going. They cannot see where they are going, and no caseworker is available to them to bring them through the process and engage on an ongoing basis. The problem I hear in my office is that families may be waiting for six, eight or 12 months without getting a phone call or email back. They may be waiting for an assessment or therapy, and it is all so stressful.

With regard to the disability network teams that were set up, I still hear they are in the process of being reconfigured and all this kind of thing. It is not good when you hear this. It is as if the whole plan has been changed. All of a sudden, people must learn how to deal with one another within the services. It is important that every parent would have a caseworker to deal with their child from A to Z and bring them through the process. These are not very technical matters. It is about communicating in the first instance. Second, it is about giving feedback and guidance to parents.

The biggest problem we have, which the Minister of State knows well, is that we do not have enough consultants, assessors and therapists in the various fields of care in which they are needed. Throwing money at it will not work. We need to start training people and encouraging more people to come back home to take up the positions.

There are many children with complex needs. They need more help, guidance and advice. Sometimes we set up systems that deal with everybody in the same way. Children's special needs do not all manifest in the same way, nor can their needs be assessed in the same way. We are talking about individuals. They are our citizens and we need to treat them equally.

As we all know and have heard, early intervention is essential. However, if you have to wait for six, eight or nine months to get an assessment, that is not early intervention; rather, it is the cause of six, eight or nine months of hardship and mental anguish for parents. They must look at their child waiting to get a service they are not getting.

Every parent prays for their child to get the best of everything they deserve. Parents with a child with a disability, more than anyone else, want to ensure that child gets the best services and what he or she needs in terms of therapy, guidance and all that goes with that.

The biggest fear of parents is what will happen to their child when they pass away. They start worrying about it the day the child is born. They feel that if the child does not get the early intervention and services, he or she will be worse off when they pass away. They have a duty, but, as a State, we have a duty also. Regardless of what talking we do, we must act immediately to help the children.

It is shocking to say that in 2022 Ireland is still not a place of equality for people with disabilities. There is an ocean of window dressing in this State when it comes to inclusivity but the truth is that hundreds of thousands of citizens are excluded from life in this country daily. Given the assessment waiting lists, lack of access to services and transport, and young people trapped in nursing homes, Ireland is a cold house for people with disabilities. I believe the Government is failing in its obligations towards people in this country.

In recent weeks, the inequality in access to public and private transport has been exposed and the abandonment of children with Down's syndrome by the HSE has been detailed extensively. The mere 4,000 children on the waiting list for an assessment of needs has been indicated as well. I raised just last week the case of Kifca McNamee, a woman in her 40s with a disability who has been trapped in a nursing home since long before Christmas and who simply cannot get a home care package that would allow her to get out. I raised this with Minister of State, Deputy Rabbitte in addition to Minister of State, Deputy Butler. I hope a solution can be achieved in this case.

Disability rights is a key objective of Aontú. My party colleague, Cavan councillor Sarah O'Reilly, has been highlighting the crisis of waiting lists for an autism assessment locally and nationally. The current waiting time for an autism assessment is two to three years. Therefore, if you have a child of three in need of an assessment for autism, you must wait for another three years for a diagnosis. This immediately puts your family at a disadvantage. A six-year-old child is on the back foot in looking for a school enrolment and the services that come with it. Many families, by the time their child is assessed, miss the boat for enrolling him or her in an ASD unit. Places in these schools are at a premium. Places are limited and fill up fast. Many families have to go down the route of private assessment for a child under the age of three, at a cost of €1,500. For a child over three, the cost is €950. It is safe to say that parents who can afford the private assessment have access to services sooner and therefore obtain better outcomes for their children. It shows there is a two-tier system in the country when it comes to children with disabilities.

In my county, County Meath, there are several schools with classes for children with autism, yet such classes do not exist in secondary school. Therefore, affected children have to go beyond the town of Trim to gain access to a school. I know of twins who were affected. One of them, who has autism, had to travel to a different town while his brother could go to the closest town, Trim.

My party colleague in Louth, Mr. Michael O'Dowd, raised the damning figures in the recent Down Syndrome Ireland, DSI, report on access to therapy services. Some 65% of those surveyed by DSI have received no speech and language therapy sessions in the past year. Forty-four percent have received no therapy of any kind in the past year. Parents have responded that no therapy sessions were received in over three years. Forty percent said they had received no communication of any kind from the HSE in the past 12 months. Nearly 25% of children with Down's syndrome under the age of five had received no therapy services. Of young children, only 49% had been to a speech and language therapist, while merely 22% had access to an occupational therapist. Upon entering school, 54% of children had not received any therapies in the preceding year, and 39% had never received therapies at all. This is abandonment. This is leaving children and young people with Down's syndrome behind in the State.

I spoke to a party colleague in Cork, Ms Joanne Murphy, a mother of a child with autism. She raised with me the tragic plight of people with disabilities in Ukraine. There are 2.7 million people with disabilities currently residing in that country, and there is genuine fear that many of them will simply be left behind at the mercy of Putin's army. War has already had a devastating effect on these people in the form of post-traumatic stress disorder, physical and psychological injuries and the complete destruction of their lives as they know them. We have a responsibility in this State to reach out as best we can to people with disabilities who are in major difficulty in Ukraine and to make sure we offer them shelter and protection.

No parent child expects their child to have a disability. In many cases, it is the parents who first notice that their baby may not be reaching its developmental milestones. The parents may notice that their baby appears different in some way to its peers. When this undefined worry becomes a reality, it is reasonable for any parent to expect that he or she will be able to access services which will enable him or her to make the right decision about the care, education and health of his or her child. However, recently in Ireland, this has not been the case. My constituency office has received many complaints from distraught schools and parents whose children have been on a waiting list for years to access an assessment of need. Many parents have found that once their child is assessed, they struggle to get any or all of the services recommended to help their child talk, move, learn and grow. This means that children's rights are not being respected in the disability sector in Ireland. Every child with a disability in Ireland has the right, under the UN Convention on the Rights of the Child, UNCRC, to the highest level of healthcare and education so as to fulfil their potential as human beings. What is this Fianna Fáil-Fine Gael Government up to? I was the first to raise the issue of the crisis of the Kilbrittain National School early intervention unit here in the Dáil about a month ago, and the suspension of funding for this great service from September 2022 onwards. I fundraised for the unit a number of years ago for the people of Kilbrittain and its surrounds. Following pressure mounted by me, the Government has reversed its decision and has granted funding for another 12 months from September 2022. However, I am not at all happy on behalf of the people of Kilbrittain, Timoleague, Barryroe, Ballinspittle and Ballinadee, who use the service in Kilbrittain. They deserve to have their children know that this excellently-run early intervention unit will be open for many years to come. It is a challenge on which I will fight this Government every inch of the way in the months ahead for the people who use the Kilbrittain early intervention unit.

I was asked to put up an advertisement on my Facebook page in support of Ballydehob National School fundraising next week for a SNA. In the name of God, is this what parents, schools and communities have been reduced to, namely, fundraising for SNAs in their schools? It is breathtaking, to say the least, that this Government can come down so hard on ordinary hard-working people, especially children with disabilities. In the ten seconds I have left I will say that I am aware that the Minister of State met some people in relation to an autism centre in Dunmanway some months ago. We will be pushing very hard to see if funding can also be obtained for that autism centre.

We must be very clear about this issue. In a recent statement, the Ombudsman for Children said that the assessment of needs delays are not a Covid problem. This has been an issue for many years. The HSE needs to explain why these measures do not appear to be working. The Minister of State must provide clarity as to exactly how many children are waiting for their needs to be assessed. We need to know the average waiting time and what areas of the country are most impacted. I can tell the Minister of State that in County Kerry, today was a typical day. I just happened to check before I left the office, and since dinner time, I have had three inquiries from people in County Kerry - not outside of it - telling me that their children are waiting to have their needs and level of disability assessed. They are awaiting a decision on the roadmap for their future. While they are waiting, they are not able to avail of whatever services they need. The assessment must be carried out in a timely fashion. All we want for what I would call special children is that they are allowed to develop and grow into the best human beings they can be. With the nurturing and the care of their parents, their families and their extended families, they will do brilliantly. Each and every one of them will be terribly important people in our society and for their families. They are wanted and loved. We want them to get the best out of life. It is up to each and every one of us. It is up to us as politicians. We would be useless if we did not come in here and tackle the Minister of State, tell her that it is her responsibility and ask her what she is going to do to ensure that parents will be able to have their little boy or girl to assessed in a timely and affordable fashion. Parents are told to go down the private route. Of course, parents would give anything for their child. They would give their last euro to do something for their child. However, in many cases it is not practical or feasible for them to do so. All we are asking of the Minister of State - and we are not asking, we are begging - is that she help these parents and children to be the best people that they can be in the future.

Despite repeated calls from the Ombudsman for Children, children with special education requirements are not having a special assessment of needs done, which is their right under the UNCRC. There were 5,060 applications for assessments of need in 2018. The Minister of State, Deputy Rabbitte, acknowledged that there were 4,000 applicants in December 2021. None of the timelines are met for any of those children. In 2018, the percentage of assessments completed on time was only 8.8%. We should note that the system is only diagnosis-led and not needs-based. I am very concerned that a change to the new standard operating procedure has left parents with nothing. An assessment is now being done that only acknowledges that the child has specific needs. In truth, this one and a half hour assessment gives nothing to parents except another waiting list. It seems that the assessment is used only to meet the legal obligations of the HSE. All service statements vary, making it very difficult to get real answers and numbers. Again, I ask the HSE what is happening. Where is the accountability? Where is the service agreement? There is a child behind each of these statistics. Moreover, this is only to get the assessment done. What happens when a child's needs are identified following the assessment? Parents then join a struggle to get any of the services recommended.

The Ombudsman for Children has said that this is not a Covid problem but is an issue that has been going on for years. During the pandemic, I opened my office to St. Gabriel's. When the structures were changed in counties Limerick and Cork, County Limerick was left without any places in St. Gabriel's. I opened my office, cleaned it out and left it open for use. Thankfully, since then, St. Gabriel's has got funding to open another sector, which will be open shortly. I thank the Government for that. However, the HSE must be accountable.

First, I thank Deputy Tully and Sinn Féin for bringing forward this very worthwhile motion. I thank Deputy Tully for all the work she has put into it. I am grateful to have the opportunity to speak again on this very important subject. For all those parents who learn that there is something wrong with their child or baby, it can be very challenging, daunting and demanding. Those parents would do anything to help their child and pay any kind of money. However, sadly, whether the therapy is to be had privately or publically, it is always challenging for parents to access the services that are necessary for their children. It is time that we had some assessment or medical report to determine the cause of so many children presenting with the diagnoses of autism, dyslexia or dyspraxia. There seems to be an awful amount of them. In my office on a daily basis, it is one of the problems that parents are raising most consistently in relation to their children. Come August or autumn, when the special needs teachers are being assigned to schools, not enough of them are assigned. Parents learn that their child is not going to get the level of attention that they require. I am sorry to see the Minister of State shaking her head, because it is God's gospel truth. First of all, early diagnosis is most important for these children. They need a lot of personal attention in their formative years. Intervention is vital in ensuring that a child develops to the best that he or she can be. It is vital to bring out the very best in such children. All parents want this for their children. I believe that they are entitled to it. Their children are our future and we need to invest in them. We need to invest more in special needs children.

The Minister of State, Deputy Rabbitte, who is present, is a woman, as is the Minister of State, Deputy Butler. I think they can and should do more for special needs teachers and the sector. They should provide far more such teachers in classrooms because they are vital for so many children.

I am concerned at the level of children who are presenting with autism. We need to do more assessment or find out what is going wrong. There are many scientists, doctors and what have you out there and they should be able to determine that there is something causing this.

I fully support the motion and its call to remove the barriers that are currently in place and preventing many children from getting an adequate and timely assessments of need. Early intervention is essential in appropriately meeting the educational and health needs of children with disabilities, yet there are more than 18,000 children on occupational therapy waiting lists alone. This is not acceptable. It is of utmost importance that the long waiting lists are addressed as soon as possible. It is completely disingenuous for the Government to claim these waiting lists have been addressed when that is simply not the case. The short preliminary assessment that was introduced does absolutely nothing to address the issue of waiting lists; it merely moves children onto another waiting list, for further assessment, with no obligation on the HSE to address their assessment within a specific timeframe. The introduction of the standard operating procedure has done nothing but further frustrate families, causing them more distress. It has actually inadvertently lengthened already long waiting lists.

This has been an issue in County Donegal for some time. Last year, I contacted the Minister for Education, Deputy Foley, the Minister of State with responsibility for special needs and inclusion, Deputy Madigan, and the Minister of State with responsibly for people with disabilities, Deputy Rabbitte, on behalf of concerned constituents of mine. I outlined my concerns regarding the proposed changes to the assessments of need system and my worry that, under the changes, children would not receive the opportunity to be assessed according to best practice. I outlined how the Association of Occupational Therapists of Ireland, the Irish Association of Speech and Language Therapists and the Psychological Society of Ireland had expressed concern regarding the new and substandard screening system. Each Minister told me the assessment of needs was under the responsibility of the Minister for Health. However, despite having contacted the Minister for Health, Deputy Donnelly, on 21 April last year, I have yet to receive a response on these concerns. We cannot blame the HSE for that.

It is very worrying that the HSE has become completely unreliable in providing people with the necessary services to which they are entitled. Parents have said they cannot depend on the HSE for anything. That is something we are hearing ever more often. As the Minister of State, Deputy Rabbitte, is aware, it is difficult for anybody to have faith in the HSE at this stage. That might be the crux of the problem and what needs to be addressed. It will be a big task. I am not exactly sure how it can be addressed but it has to be tackled because even the Taoiseach is now saying it is not a problem of money as the money has been provided and all that kind of stuff. It is as if the political system is okay because the Government is providing the money and the HSE is this mammoth standing in the corner that does everything and just eats up money. As far as I know, however, the HSE works for us. I have stated before in the House that the HSE works for all the citizens of this country but it seems to me that we work for the HSE. It seems to me that the role of the Government to give the HSE money with which it can do as it pleases and then people have to put up with a substandard service from the HSE because that is what we deserve. So long as the HSE is working and paying its employees big money, that is okay and everything else is grand. Ultimately, that is the problem. There needs to be a shift and rebalancing such that the HSE comes to terms with the fact that it works for us; not the other way around.

Many parents have been pushed by the HSE into paying for private diagnoses due to unreasonable waiting times. AsIAm conducted a survey, to which reference has been made already, that revealed 80% of parents and guardians had to wait at least a year for an autism diagnosis. How is that acceptable in this day and age? Many families are unable to pay the significant cost of a private diagnosis, so what has been created is yet another system of inequality and inaccessibility for lower income families. Schools have provision to get a couple of assessments done every year, but they hold off on doing so in case they need them at a later stage. Parents who need the service and may not be able to afford it then lose out because schools are holding on to the couple of assessments they are allocated. That is just not acceptable in this day and age. There is something seriously wrong when people are forced into private healthcare because the public healthcare system is unable to adequately support them. That can be said about every area of healthcare. However, the fact that children are not only struggling to get the treatment they need, but are unable to even get a proper assessment of their needs in the first place is particularly shocking.

The healthcare system is overwhelmed and broken. That has been the case for many years - long before the pandemic - and it demonstrates a significant issue in respect of how the system is set up and runs. Unfortunately, I believe the Government lacks the vision and ambition to even address this broken system. Not only that, the Government is actually failing to fulfil its legal obligations. Under the Disability Act 2005, children have a statutory right to an assessment of need which must be carried out within six months of an application. The inadequate preliminary assessment that was introduced is not a viable solution and does not speed up the waiting lists in any real way. It is only a con to try to get over the fact that, under the Disability Act, the assessment has to be provided. it only creates even more complex problems further down the line. It increases the risk of inaccurate or incomplete diagnoses. This has exacerbated the length of waiting lists that already contravene the Disability Act 2005.

In addition, Article 7 of the United Nations Convention on the Rights of Persons with Disabilities provides, "States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights". We are not honouring our commitment to that international standard. This is completely unjustifiable and more needs to be done to ensure children are receiving the assessments of need to which they are entitled. The HSE needs to allocate funding to increase the number of staff and level of service available. It needs to ensure the assessment of need process is comprehensive and identifies the full range of supports and services a child needs, rather than diluting the service that is delivered to children. The current system is nothing short of neglect. These long waiting lists are nothing short of neglect. This needs to be addressed immediately, so I strongly support the motion.

I thank the Deputies for bringing forward the motion. It is important for me to make every minute count. Sometimes I do not get asked questions or they are not selected for Oral Questions to the Departments of Health or Children, Equality, Disability, Integration and Youth, so when I get a motion like this, I welcome it because it gives me an opportunity to lay out my stall on the floor of the Dáil. I thank my colleague Deputy Pádraig O'Sullivan who has kept me company all evening. It is greatly appreciated.

We are here to discuss what I believe is one of the most important and ambitious policy reforms in the health service in recent memory, namely, the implementation of the progressing disability services for children and young persons, PDS, programme. It is clear from the debate this evening that the roll-out of the PDS has not been as smooth as we would like. Several issues have been highlighted and it is important to outline some of the plans on which I am working to improve disability services. I chose to speak at the end of the debate because I wanted to hear the contributions of Members. I hope that somewhere in my contribution we will marry in agreement right across the House.

I wish to put on record my sincere apologies to any family experiencing delays. These families are angry and frustrated at a health service that is failing their children. Parents should not be left fighting for services. I am working to make our services better. I am acutely aware of the issues facing families with children with special needs and it is incumbent on me to meet these families and hear their experiences, good and bad, in getting a service for their children. I have done whatever can be done.

Later this month, I will start a new parents' forum that will take place in every county and give parents an opportunity to air their concerns as well as to hear how PDS should be working for them. I look forward to meeting parents as well as engaging with the HSE and the lead agencies on the matters raised. I will have further details on the parents' forum in the coming weeks.

Investing in children's specialist disability multidisciplinary services is an important priority for the Government. Through the two budgets I have introduced, I have created an additional 375 posts to strengthen children's disability services across the country. This is on top of the 100 posts allocated in 2019.

As well as increasing staff numbers and new recruits, we also need to stop the flow of staff out of the disability area. To do this, there must be more career opportunities for clinicians so that they have the space to further develop their skills in disabilities and to stay working in this space. I have been told by lead agencies and the HSE that there needs to be more senior grade posts and I can confirm to the House that disability services management will appoint more senior posts in 2022 than in previous years. The HSE also informed me that it has indicated to the CHOs that the recruitment of staff at a senior grade, particularly with the goal of enhancing retention, can and will be accommodated. The CHOs believe they will exceed their 2022 allocation and HSE headquarters will consider a business case to allow some increase in senior posts. This is a very welcome change for 2022-23. I will continue to engage with the HSE on the matter.

The role of administration cannot be underestimated and I have secured more such posts in the 2022 budget. Teams need to have a sufficient administration staff so that the clinicians can do their job. We need to recruit into grades 3 and 5 to ensure clinicians are not doing administration work such as answering telephone but are delivering on intervention.

Another important issue raised with me is the increased strain on psychologists. To address this, a request has been made for the use of assistant psychologists on children's disability network teams, CDNTs, which would help ease some of the pressure on an already strained area of expertise. The HSE confirmed to me today that it intends to open the recruitment and deployment of assistant psychologists in line with what was sanctioned and issued to the Department of Health in 2021. We have seen how this use has been bolstered best in the mental health services. We must ensure we are utilising all possible resources to support children and families.

I hope the substantial investment by this Government in all of these resources will go a significant way in dealing with concerns expressed by parents and the Ombudsman for Children. It is important to note that while I welcome this conversation, it is a shame more suggestions have not been made. The assessment of needs process did not work in the past. The standard operating procedure is under review and when that review is completed I will take on board all of the outcomes. We have cleared 98% of the backlog in assessments of need. The SOP was introduced prior to my appointment and I allowed it to go through. I am now awaiting the outcome of the review because we have moved from one list to another and there is no denying that. I will act in accordance with the findings of the review of the SOP. The HSE and the trade unions are engaged in that review process. As I said, I will await its outcome and pursue its recommendations and any potential changes it may suggest.

On autism assessments and supports, I discussed this matter last week during a meeting with the WHO in Copenhagen. Countries across Europe are trying to address issues similar to those we have here and no consistent approach is being taken. All countries are looking around to see what may be the best model of support.

An interesting point raised by the WHO was that in Azerbaijan, a regionalised assessment and diagnosis programme is in operation and appears to be working for that country. It is something that I will look further into with the HSE as there could be lessons learned from it. It involves having a preliminary assessment done by a diagnosis assessment team while, at the same time, the children come straight back into intervention. One of our colleagues at the meeting set out clearly what was being done. What is needed is an assessment of diagnosis and intervention, which should be needs-led rather than diagnosis-led. An assessment should be intervention. To be honest with the House, one of our colleagues asked what was going on and why everything seemed to go into diagnosis.

Questions have to be asked of the education sector when schools state they will only accept children if they have a diagnosis and children will not get supports if they do not have such a diagnosis. Nowhere in the Disability Act does it state that a diagnosis is needed to access education. I accept Deputy Ó Ríordáin's point that the EPSEN Act and the Disability Act both need to be reviewed. There is no doubt about that.

We must strike a balance to ensure that no child is left waiting and I am determined to ensure that disability services are functioning fully and working for families, not leaving them stranded without support.

I confirm to the House that I am working on a package of supports to provide the CDNTs with additional supports to address both the backlog of autism assessments and to provide additional therapeutic supports. I hope to confirm that in the coming weeks.

I assure the House that I will leave no stone unturned when it comes to finding the solutions we have discussed this evening.

Regarding the ratification of the Optional Protocol to the UN Convention on the Rights of Persons with Disabilities, the Minister, Deputy O’Gorman, and I have indicated that we are open to an early ratification of the optional protocol, if possible. Our approach to the UNCRPD since ratification of the main convention has been one of progressive realisation where we make progress towards full implementation step by step and year on year.

I acknowledge the work of parents and I again apologise to the parents of children who are on waiting lists. I acknowledge the work of AsIAm, Involve Autism. I am afraid I will leave people out but Inclusion Ireland and the Rainbow Club in Cork are doing phenomenal work in peer-to-peer support of parents but also in supporting children. The Rainbow Club in Cork is not open even a year at this stage and is supporting 500 families in a particular area. It is phenomenal to see what it is able to do in its community centre. I also thank the Joint Committee on Disability Matters for putting such a focus on disability and allowing various voices to appear before it to share their experience and enable us to take from their learning.

Deputies asked what exactly is happening with the autism strategy. A consultation document will be published in the coming weeks seeking an input from the autism community on what direction it believes the strategy should take and the priority issues it wants to focus on. I have secured funding for the strategy and the next phase will be announced very soon.

I thank both Ministers, Deputies Stephen Donnelly and O’Gorman, for ensuring the funding I will announce in the coming weeks will be provided to deal with the backlog of assessment of diagnosis in respect of autism. Many families are very frustrated about the waiting lists for assessments. I need to ensure, however, that it happens in every CHO. There will be substantial investment and a plan for addressing the waiting list. It will only be as good as the integration into the PDS teams.

I thank the Minister of State for her reply. I have listened to all the previous speakers. In CHO 4, 5,472 are waiting for speech and language therapy, occupational therapy and physiotherapy. That does not make for good reading.

The Minister of State asked for more ideas. I have experience of cases involving young families who spent four or five years in the courts trying to get proper care. I call on the State and the HSE to stop using State solicitors and public money to fight families in appeal cases. That practice should be struck out straight away. I have in mind one particular family which won its fight but it is not the only such family I know.

It would be remiss of me not to thank Deputy Tully for introducing the motion. I am very pleased the Government is not opposing it. I agree with speakers from all sides of the House that if we work together, we can get this done. I have worked with the Minister of State and I know she is passionate about this issue. I have always been fair. We are here to represent the people outside the House. This is an urgent issue and if we can collectively work on it and do the right thing, it will reduce stress levels. We have been discussing mental health issues, stress on families, marriage break-ups and so on. Families with enough cash can go private and their child will be seen in a short time. I cannot understand the reason for the competition between the health service and private practice.

If we can work together on this and do the right thing, there is certainly an urgency for it. I would like to say more, but other Deputies wish to speak.

The most frustrating and angering part of being a Deputy is when one is dealing with parents who are getting in touch in order to expedite getting healthcare for their children. It has to be said that no parents should have to contact any elected representative to tell that representative the most intimate details of the medical needs of their child to try to secure disability or occupational therapy or any other service that their child desperately needs. No parent should have to fight for years to secure an assessment of needs, which the law states should be delivered within six months. To reiterate, it is not just that the Government is failing those children and their families, the Government is breaking the law by doing so.

In my HSE region, last October there were 1,956 children waiting for an initial assessment for speech and language therapy, 1,444 were waiting for occupational therapy and 1,105 were waiting for physiotherapy. These numbers represent real children who are being denied the right to live full lives. They represent families who are going through the hell of trying to deal with HSE bureaucracy or the hell of listening to broken promise after broken promise. I met a mother today who travelled a long distance to be here for this debate. She has two sons with special needs, who have been cared for and loved by their family all their lives. However, they have been let down by the State every day of their lives. They are still being let down. Their mother, who has enough to contend with, had to establish a charity along with other families in order to provide her children with a service that should have been provided by the State. It is not good enough; it is not fair. In fact, it is a scandal.

I commend Deputy Tully on the work she has done and on bringing this motion to the House. I commend the motion and I welcome the fact that it is unopposed. However, it must be followed through with real action and with the implementation of the words as well as the actions required in the motion.

First, I commend my colleague, Deputy Tully. I thank the Minister of State for her reply. I was not present for the start of the debate. I have two minutes so I wish to be focused.

As other Deputies have said, it is very frustrating when parents are waiting. Even if it is not for the assessment of needs, it can be for speech and language therapy and occupational therapy. I am encountering many parents who are trying to borrow money, perhaps from a credit union but often, worryingly, from moneylenders or from family members, to try to pay for these therapies privately. What is becoming a major issue, and I wanted to mention this especially, in the constituency of Carlow-Kilkenny and particularly in Kilkenny is the lack of ASD class places. I know this is a matter for the Minister of State with responsibility for special education, but I want to take the opportunity to raise it. I can immediately think of ten children who do not have an ASD class place for September. These are children who are turning six years old, so they are out of the early childhood care and education, ECCE, system.

Parents are at their wits' end. The same parents are saying they have had to battle and fight for everything. They have had to pay for a large amount of the services, be it private assessments or therapies. Now they are not even being provided with school places. Ironically, in the same week that children who are starting in junior infants are getting their letters and know they will be starting school in September, we are treating children with additional needs as second-class citizens who do not know where they will be going. Some of them might be facing very large distances if they get the opportunity to get a place. I wanted to raise that issue. Again, I commend Deputy Tully on her work in this area.

First, I thank all the Members who contributed to this debate and thank them for their support of the motion. I also thank the Government for supporting the motion. It is an issue that is affecting children and families in all parts of the country. We all agree it is an urgent issue that must be addressed. Children cannot continue to wait for supports they are entitled to, and parents cannot continue to face ongoing battles for supports or to have to source services privately or take the State to court.

We are calling for the CDNTs to cease using the standard operating procedure and instead ensure timely access to a full and proper multidisciplinary needs-based assessment. The HSE is using preliminary team assessments to avoid being taken to court for not fulfilling its obligations under the Disability Act. The preliminary team assessment is not an assessment of need as outlined under the Disability Act and the HSE should stop pretending it is. I agree with the Minister of State that the Disability Act needs to be reviewed and updated. It definitely does, and especially to recognise the fact that we have ratified the UNCRPD and we have an obligation to implement that. If we do not, we will see a raft of actions taken against the State for needs being unmet. I welcome the fact that the optional protocol will be ratified soon. Again, however, it will allow people to take cases to the UN under the optional protocol for needs not being met.

Other Deputies have referred to court cases, settlements and the HSE and the Department of Health using money for them. It is our money; it is taxpayers' money. We, the taxpayers, are paying for something we do not agree with. We do not agree that the HSE should be fighting these cases in court.

There is a need for a cross-departmental strategy on workforce planning. A clear plan on training, recruitment and retention of sufficient health and social care staff is required. The HSE needs to discuss this with the professional organisations that represent the various therapists and health professionals in the CDNTs. At present, it is refusing to engage with them, and there are things that can help to address the issues there. We need to take everybody on board and look at everything.

We also need a fully costed and time-bound implementation strategy for disability services. We have a disability capacity review and it identified significant unmet need. There is no point in conducting reviews if we are not going to address their findings.

The Minister of State mentioned another element of the PDS model that has not been enacted, which is the family forums. I welcome the fact that they are going to be established. Parents need input into the teams and to be fully informed of what is happening. At present, they are not. What they are being offered are online courses. Many parents have already taken the courses. However, they are basically being threatened that if they do not take the courses, they will be removed from the list. That is terrible. It should not be happening. Parents have welcomed the courses alongside therapeutic intervention from a professional, but not as an alternative. Parents are not trained therapists.

Last year, the Minister of State paused the removal of therapists from special schools, but I am informed that the therapists have been removed. They might be engaging with the schools, but they are not engaging with the students. They are engaging with the staff. It is not on the same level that it was. Again, some are pointing out that there was no risk assessment taken of doing this.

We need to see waiting lists published. There must be comprehensive lists of who is waiting on assessments, who is waiting for interventions and so forth. I feel we are not being told the truth about it. Also, as I mentioned earlier, the Government must recommence, without delay, the reporting of data and publication of reports, pursuant to section 13 of the Act, so that it can plan for unmet need.

All the teams must have clear targets and performance indicators. There must be ongoing checks on how the service is operating. Outcomes must be measured. Otherwise, how will we know if the services are working? People need to be held accountable if the outcomes are not being met. The idea behind the establishment of the CDNTs was to ensure quicker access to services for children with more complex needs, but that is not happening. The ones with less complex needs are supposed to go to primary care and those in need of mental health supports were supposed to go to CAMHS. What we find is all the HSE bodies fighting among themselves for staff and saying, "We will not support that child. That child should go to your service or to your service". That is not fair, and children are being left out in the cold.

The Minister of State mentioned that there will be more senior posts, but the PTA is a huge problem for senior clinicians. They do not agree with it and I cannot see her getting them into the teams while it remains. I apologise for going over time.

Motion agreed to.
Top
Share