Dáil debates

Thursday, 29 April 2021

National Autism Empowerment Strategy: Motion [Private Members]

 

5:40 pm

Photo of Aodhán Ó RíordáinAodhán Ó Ríordáin (Dublin Bay North, Labour)
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I move:

“That Dáil Éireann: recognises that:
— the special interests and strengths of people with autism are a vital part of our society and we lose out when their unique insight, experience and contribution is lost, and that they require and deserve inclusion, equality and accountability;

— for people with autism and their families, the delays, cancellations and curtailments in healthcare, education and other public services caused by the Covid-19 pandemic have made what was already a poor situation considerably worse, and that as a result they are in a uniquely isolated and vulnerable position; and

— this isolation has been reinforced by the discovery that the State, through the Department of Health, has surreptitiously compiled dossiers of sensitive personal information, from medical and other healthcare and educational sources, on children with autism, a practice that this Dáil should condemn, and the publication of an internal review into this matter will do nothing to restore confidence as it lacks the independence and transparency so urgently required;
notes that:
— the long-standing adversarial approach taken by the State, when services which children are entitled to, or urgently need access to, are absent or failing, has put major strain on families and carers, and destroyed the trust of many in the State;

— early diagnosis and intervention for children with autism is critically important, but waiting times for both assessments and services have always been bad, and are now intolerable;

— in a recent reply to a parliamentary question, the Health Service Executive confirmed an average 19-month waiting time for a child’s assessment of needs, with 5,078 assessment of need applications overdue for completion, which is in contravention of the legal requirements under the Disability Act 2005, where it is set out that assessments for children with additional needs, such as autism, should be commenced within three months and completed within six months;

— less than 10 per cent of assessments of need are being carried out within the statutory time-frame, and this is in contravention of the Government’s own National Autism Plan which promotes timely access to diagnostic assessment, and which is indicative of the Government’s abject failure to support families of children with autism;

— due to Ireland’s two-tier health service, families from more disadvantaged backgrounds, or without the financial resources, cannot access timely intervention, which is leading to increased levels of stress and difficulties for families of children with autism;

— many provisions within the Education for Persons with Special Educational Needs Act 2004 remain to be commenced;

— €63,000 a day, or €11.6 million a year, is spent transporting children with autism and those with special needs in south Dublin to schools in other parts of the city, due to a failure to provide appropriate places locally; and

— a study by Dublin City University academics in August 2020, showed that as a result of Covid-19 restrictions, a decline was reported for 61 per cent of children with autism, with parents noting:
— a decline in their child’s ability to self-regulate emotions in the case of 34 per cent of children;

— a decline in motivation to engage in activities, including school work, in the case of 18 per cent of children; and

— a decline in academic skills such as maths, reading and writing, in the case of 14 per cent of children; and
calls on the Government to:
— commission a fully independent review, by a body other than the Department of Health, into the Department of Health’s practice of surreptitiously compiling dossiers of sensitive personal information, from medical and other healthcare and educational sources, on children with autism;

— introduce a new national autism empowerment strategy, which would take a rights-based approach to the inclusion and acceptance of people with autism in Irish life, that recognises the significant strengths of people with autism and places their voices, and those of their families, at the heart of the planning and decision making process, is underpinned by a budget and by draft legislation, and for the strategy to be published and submitted for the approval of both Houses of the Oireachtas by the end of July, and that the strategy should include:
— direct involvement in its development from people with autism and their families, through the establishment of a working group and direct consultation with the community;

— learning from best practice abroad, such as Malta’s Persons within the Autism Spectrum (Empowerment) Act 2016, and to lay out the establishment of an Irish autism advisory council, similar to the Maltese Autism Advisory Council, to advise and guide Government on autism strategy and which holds Government to account;

— the immediate abandonment of the new standard operating procedures for assessment of need under the Disability Act 2005, which have reduced assessments of children to a meaningless box-ticking exercise, and to put in its place a system for professional, multidisciplinary, in-depth assessments of need that will provide both a detailed description of a child’s needs as well as setting out proposals for tailored, specific and evidence-based intervention;

— urgent action to address waiting lists for assessments of needs, occupational therapy, speech and language, audiology and other areas of concern, with the immediate recruitment of additional therapists to ensure early intervention;

— a best practice model of service delivery, assessment, diagnosis and intervention for service users with autism, drawing on international expertise, with guidance for health service providers on how to meet the needs of both children and adults with autism, and their families and carers;

— a clear and detailed intervention plan, funded and time-bound, on support services for families and carers, and a fully established roadmap on how family support services are to be developed;

— appropriate amendments to the definition of disability in equality legislation, so as to include specific reference to autism and other developmental issues that affect a person’s capacity to take part in social interactions or to form social relationships, and to incorporate a rights-based, child-centred and inclusive approach;

— a sustained autism inclusiveness campaign and the provision of autism inclusion procedures and real engagement, including training for all professionals who frequently deal with adults with autism;

— appropriate regulation of autism services and therapies and recommendations on appropriate action to be taken in relation to therapies which are not medically, or evidence based, make false claims or are dangerous to the welfare of people with autism;

— the inclusion of a question on autism in the next national census to determine the number of people with autism in the State;

— the implementation of the recommendations of the report entitled ‘Unmet Needs - A report by the Ombudsman for Children’s Office on the challenges faced by children in Ireland who require an assessment of their needs’, including and not limited to:
— additional resources, including a refund element for private assessment to get to grips with the significant waiting lists;

— changes to the Disability Act 2005, to ensure a holistic and multidisciplinary approach to the assessment and identification of a child’s development needs; and

— recognition of the special educational needs of children in legislation, via changes to the Education for Persons with Special Educational Needs Act 2004, to ensure these needs are met in a timely and appropriate manner;
— the commencement and resourcing of all relevant disability legislation without delay;

— in relation to adults with autism, access to diagnostic services, to key worker support and appropriate mental health care where required, and a pathway of care which clearly maps services and ensures their consistent availability across the State and outlines how the healthcare, educational, employment and social needs of adults with autism are to be addressed throughout their lives and across the public service in terms of access to services, justice, housing, employment and social inclusion, with parity of access as the underpinning goal; and

— a clear system of accountability and scrutiny relating to autism service provision.”

Notes were being taken. When a family who are adjusting to the realisation of a challenging diagnosis come into contact with the services of the State, they should assume a culture of partnership, compassion and care, but notes were being taken. They fear for their child because of an autism diagnosis and ask how he or she will navigate the world. They wonder whether the child will have to endure prejudice, misunderstanding or isolation, and ask themselves who will partner with them to empower him or her, but notes were being taken.

Parents have long waiting lists, of 18 or 19 months for an assessment of need or of 35, 36 or 40 months for some essential interventions. Why are these periods counted in months? Thirty-six months is three years. They ask these questions at night, heartbroken at the sight of their sleeping three-year-old, who will be six years old by the time their country comes to their aid, but notes were being taken. In rooms where the compassion of the State should have been most manifest, notes were being taken to add to a dossier that would be used in a court case. If a parent was so exhausted and frustrated by the failures of this country to empower his or her child that he or she turned to the legal route, the State would turn to its notes. They are dossiers not just on the child but on his or her entire family.

The "RTÉ Investigates" programme broadcast last month exposed the culture of confrontation that emanates from the corridors of the permanent Government: notes were being taken. While the exposé was shocking, it was somehow, ironically, completely unsurprising because no one who has ever had to embark on this adventure with an autistic child would be in any way surprised by the culture, the systemic failures and the institutionalised obstacles we promote as a child-centred approach. No western democracy would attempt to stand over such pathetic waiting lists. No genuine republic would force parents to go on a hopeless merry-go-round trip of local schools to access a place for their child, and no country with aspirations for all its children would force families to the courts when they try to vindicate their rights and then reach into a filing cabinet or download a file within which is a dossier compiled by taking notes.

We in the Labour Party want the Government to take note. We want Dáil Éireann and the citizens to take note. Autistic people are a gift, an inspiration, a guiding light for all of us. We are enhanced, empowered and enlightened by them. Their potential is limitless; all they need is a society willing to listen, learn, love, empower and take note of who they are.

There was a man more than 100 years ago who took notes. He took notes for an address he would never make, during a struggle and a time after which he would be long forgotten. His name was Tom Johnson, the leader of the Labour Party in 1919. He was entrusted with the honour of scripting the Democratic Programme of the First Dáil. As voices such as his struggled to be heard over the sound of gunshots from the men and women of war and of flags, he wrote of the children. In his well-crafted notes, he wrote:

The Irish Republic shall always count its wealth and prosperity by the measure of health and happiness of its citizens. It shall, therefore, be the first duty of the Government of the Republic to make provision for the physical, mental and spiritual well-being of the children, to ensure that no child shall endure hunger or cold from lack of food, clothing or shelter, that all shall be provided with ample means and facilities requisite for the education and training of free citizens of a free Gaelic nation. A condition precedent to such education is to encourage by every reasonable means the most capable, sympathetic men and women to devote their talents to the education of the young.

We should reflect on the notes he took and the words he used, such as "health", "happiness", "physical, mental and spiritual well-being" and the need for "sympathetic men and women to devote their talents to the education of the young". This is the founding document of our State, of the Oireachtas. It is said of Tom Johnson that he wept openly when he heard those words read aloud as he had written them in his notes. Have we failed that aspiration, that purely republican aspiration, for the well-being of the children of the sympathy, understanding and compassion of that same State? As today these children try to find their voice between the flag-wavers and the tax-cutters, they now need to be empowered.

We need a national autism empowerment strategy to correct the mistakes of the State and to embed here the international best practice of others. The Maltese autism Act is a template this country should work from, an Act that in its citation seeks "to empower persons within the autism spectrum by providing for their health and well-being in society, the betterment of their living conditions, their participation and inclusion in society and to make ancillary and consequential provisions thereto in full adherence to the UN Convention on the Rights of Persons with Disability." There are those words again, as if inspired by Tom Johnson, "health", "well-being", "inclusion" and "betterment". It is an Act of empowerment and defiance that in the face of generations of misunderstanding, prejudice and underfunding, autistic people are now ready to defy the odds, the history of their state and the expectations of their country to live full, productive, healthy and love-filled lives. We should compare notes with Malta.

At the heart of the Maltese legislative achievement and of our motion is accountability. It is what parents are crying out for, in regard to service providers, to when mistakes are made and gaps need to be filled, and to this House, Dáil Éireann. These are the notes the Minister of State and the Government need to take. They should take note from Malta and the advocacy groups and parents' associations that are crying out for the State to take some of the burden in this empowerment process. I refer to groups such as those in Dublin 6 and 6W, which are working with Senator Bacik, or in Dublin 12, which I have met with Senator Moynihan and which are changing the world for their children, or to the children I have met in my constituency such as James Field and Abigail Cahill, who have changed my entire understanding of the world in which they live. The Government should listen to groups such as AsIAm, which empowered us in the Labour Party to draft our motion.

It is not right that parents feel they are at war with their Government and State.

It is exhausting, humiliating and defeating. They make phone call after phone call, write letter after letter, get referral after referral, are put on waiting list after waiting list and contact school after school and, all the while, notes are being taken. In recent days, we have been flooded with stories from all over the country which should shame us all. I refer to the mother in Limerick who has been told there is no space for her child in any local school and so must travel to Nenagh twice a day, covering a total of 184 km every day, because the transport needs of her child have not been resolved. Why should that mother believe that anyone cares? How can she possibly believe in this republic as she drives past the schools that cannot take her child in her own car because transport has not been arranged to take her child to a town in another county, 46 km away, simply because her child is autistic?

Many wonder if it is because of notes that the State is slow to respond. I refer to euro notes. Millions of those euro notes could be saved by empowering our autistic citizens. The money the Government thinks it is saving as it hopes that parents will access private assessments or therapy is a pittance when compared with the money that would be saved by preventing a young person with autism from becoming vulnerable. Such people are more likely to enter homelessness, to experience unemployment or to fall prey to addiction. If the Government thinks empowerment is expensive, it should try disempowerment.

There is, however, hope, ambition, vision and empowerment. We ask Government to support our motion. It involves an empowerment strategy that focuses not only on health and education, but on housing, transport and employment as well. We say to the autistic children, young people, women and men of Ireland that there is a reason "autism" sounds like "awesome". We say to them that they should strike their own note, sing their own song, play their own instrument in their own way and in their own time, and march to the beat of their own drum. We need them and we celebrate them. They empower us. We will empower each other. We say to their families that they are not raising their children to be second-class citizens; we will not permit it. We commend this motion for a national autism empowerment strategy to the House. It is time to stop taking notes. It is time to take action.

5:50 pm

Photo of Alan KellyAlan Kelly (Tipperary, Labour)
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This is one of the most important issues we could be dealing with. I am delighted, and also shocked, that the Government has actually accepted our motion. It is incredibly important and something in which we fundamentally believe, but it is also very critical of the Government. In that sense, I am delighted the Minister of State's Government has accepted that criticism.

I start my contribution by telling a powerful story, written by a parent of an autistic young kid:

I can see Sarah is excited as I collect her from school. She squeezes my hand and tells me she has been invited to a birthday party. Sarah is 7 and has Autism. This is the first time since starting school she's been invited to a party. Molly from her class put invitations in all the schoolbags Sarah tells me. We get to the car and Sarah starts searching her schoolbag but can’t find the invitation.

So I start searching too, and realise after emptying the bag that I shouldn’t have. I can see Sarah’s face drop as the reality sinks in. I hug her as she sobs and explain that maybe Molly could only invite one or two girls, maybe Molly forgot to put the invitation in her bag? We both know this is unlikely. But I have to try to say something to make my girl feel less hurt and rejected.

This story was outlined in a recent article by Lhara Mullins from the National University of Ireland, Galway, on RTÉ One. It truly pains me every time I read it but it is a very common story and one which many parents of autistic children will recognise. It encapsulates the hurt, rejection, social exclusion, suffering and constant trials which autistic children and their parents must endure because they are excluded, and for no other reason than being absolutely brilliant.

The truth is that the State, the very entity that should be standing up for our autistic citizens and their rights in our society, appears to be hell-bent on excluding autistic children and their parents from that same society. Whether it is keeping dossiers on children for use in court proceedings, breaking its own laws by having waiting lists for assessments of need that are, on average, three times longer than is allowed by the State or the adversarial approach it has taken to the autistic community again and again, the State continues to be in dereliction of its duty to its own citizens. The State's treatment of autistic citizens is a stain on our Republic and that cannot continue.

As a result of this failure by the State to provide the support it should to autistic citizens, stories like Sarah's are repeated across the country every day. These are stories of exclusion, hurt, isolation and despair. The Labour Party brings this motion before the Dáil because we want it to declare this evening that, when it comes to the shameful way in which this State has treated it autistic citizens, enough is enough. We want it to declare, once and for all, that autistic children and adults and their families deserve to be fully included in Irish society and that they will get the support from the State they need to make this happen. We in the Labour Party are standing by autistic citizens, young and old, and by their families.

In advance of tabling this motion, we asked for people to tell us their stories of what it is like to be autistic in Ireland. I will refer to one of the submissions we received. The person in question was diagnosed at the age of six, their parents having had to get this carried out privately. This person says that, as autism is a very stigmatised condition, they do not usually disclose it. The person was bullied in school because of it and the special needs classes were not aimed at this person's specific needs and so did more harm than good. These classes were also scheduled at the same time as Irish classes, even though this person is not exempt from Irish, because of the belief gap in the education system with regard to autistic people. The person says it hurts that many people use the term "autism" as a pejorative and that, as an autistic person, one's abilities are often doubted, which can be patronising. This person has co-morbid hypotonia, low muscle tone, and Tourette's syndrome, has difficulty with walking great distances, writing and other physical activities and gets back and leg pain because of the hypotonia, which was not properly treated with occupational therapy and physio as a child. While it is not curable, this person would have a lot less difficulty now if they had received those services in time.

We in the Labour Party have listened to many stories such as this, stories of autistic citizens being failed again and again. This is why we are tonight demanding radical change in how this State supports its autistic citizens. In our motion, we demand that the Government produce a national autism empowerment strategy by the end of July and that it establish an Irish autism advisory council, modelled on what is working in Malta. We are calling it an empowerment strategy very deliberately because it is time that this State and wider Irish society recognised the unique talents, gifts and perspective which autistic citizens can bring to dealing with problems we face. We want autistic children and adults to feel included, involved and empowered as members of Irish society because of the many gifts which they have.

For anyone listening who doubts what I am saying or doubts the great potential of people on the autism spectrum and what they can offer to society, perhaps it is time they heard a list of people from history who are either confirmed or strongly suspected of having been on the autism spectrum. This list was compiled by Michael Fitzgerald, professor of psychiatry at Trinity College Dublin. The long list includes Albert Einstein, Isaac Newton, George Orwell, Beethoven, Hans Christian Andersen and Immanuel Kant, all of whom are believed to have been on the autism spectrum. Another such person is Wolfgang Amadeus Mozart, whose hearing was famously so delicate that loud sounds would make him physically ill, a telltale indicator of being on the autism spectrum. The list goes on and on.

Labour wants this Dáil to adopt this motion this evening to send a message to our autistic citizens and their families that they are valued, that they belong, that they have a wonderful contribution to make to Irish society and that the manner in which the State has been treating them is wrong and will now change for the better. We understand that the Government is not going to oppose this motion, which we welcome. We also welcome that, by accepting this motion, the Government is committing here and now to put in place the national autism empowerment strategy by the end of July, as called for in the motion. If the Government does not follow through on this, given that it is not opposing the motion, it will be letting all of these citizens down.

Do not let them down. They have been let down for too long.

We take from the Government's agreement to the motion that it is committing to establishing an Irish autism advisory council. I want the Minister of State to confirm this in her response. If the Government accepts the motion but fails to implement the national autism empowerment strategy or establish an Irish autism advisory council, it will be failing all of our autistic citizens.

By accepting the motion, the Government is finally admitting that it has failed autistic families through long waiting lists and that the internal Department of Health report on the compilation of dossiers on autistic children was unacceptable. We look forward to the Government shortly initiating a review, one commissioned by a body other than the Department of Health, as called for in the motion.

I acknowledge that we have serious problems not only with assessments of need, but also with the way in which the roll-out of autism spectrum disorder, ASD, units happens. There are many gaps. I have had to fight and fight to get ASD units for my home town of Nenagh. It is the second largest town in Tipperary and the largest in north Tipperary, but there was not a unit in it until recently. That is not good enough. This situation is replicated in many other places around the country.

I acknowledge the work of AsIAm, Mr. Adam Harris and his team. I acknowledge the work that has been done to make Clonakilty Ireland's first autism-friendly town. Approximately a year and a half ago, I called a meeting in Nenagh about turning it into an autism-friendly town. I expected maybe a dozen people, but a couple of hundred people turned up or got in touch. We have formed a committee. Mr. Martin Slattery is our chairperson and Ms Emma Burns is our secretary. We also have Ms Louise Morgan-Walsh, Ms Noelette Brohan, Ms Carolyn Bracken and the amazing Mr. Nicholas Ryan-Purcell. I encourage everyone to get involved in setting up such groups across the country because the changes they bring about are incredible. Doing this ensures that people with autism know that there is a friendly environment in which they can evolve and grow and in which they will be part of a community that embraces them.

I will end by acknowledging the incredible work done by Mr. Ryan-Purcell. His film, "This is Nicholas - Living With Autism", which was released in February 2019, has had a significant impact for people with autism. I ask everyone to watch it.

I welcome that the Minister of State will accept our important motion, but we will follow up on it and we will know by July if she means what she says.

6:00 pm

Photo of Anne RabbitteAnne Rabbitte (Galway East, Fianna Fail)
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I thank the Labour Party for tabling this motion. I am joined by the Minister, Deputy O'Gorman.

Last September, I spoke in the House about my vision for the provision of disability services for people of all ages in the coming years. My vision is ambitious and I make no apology for that. People with special needs deserve nothing less than the best services that the State can provide.

This discussion focuses on a number of strands, including health, equality, education and inclusion. It shows that every person in society, regardless of whether he or she has a disability, is valued and must be given every possible opportunity and support to realise his or her potential. Given that April is world autism month, it is fitting that the House has an opportunity to debate the matters raised in this Private Members' motion.

On assuming ministerial responsibility for disability matters, one of the issues that I sought to remedy was the number of overdue assessments of need for children across the country. At the end of June, the backlog had risen to approximately 6,500 for a number of reasons. By working with the Minister for Health, Deputy Stephen Donnelly, I secured funding of €7.8 million to address this issue. I am pleased to inform the House that, by the end of last month, we had reduced the waiting list to approximately 1,860 cases, a reduction of over 70%. I thank the HSE, its staff and clinicians around the country for these impressive results. It is important to note that this progress continues to be made despite the challenges posed by the pandemic. More importantly, the clearing of the backlog will allow services to focus on interventions to support the child, which is the key piece.

Ensuring that these therapies can be delivered in the timeliest way is where the progressing disability services for children and young people programme, PDS, comes in. It will completely change how we deliver services and supports for children from birth to 18 years of age. The HSE is establishing a total of 91 children's disability networks across the nine community healthcare organisations, CHOs. To date, 41 of these network teams are already in place, with just a handful of managers left to be appointed. Under PDS, teams will provide specialist support services for all children with significant disabilities regardless of their diagnoses, where they live or where they go to school. It will also mean the end of the unacceptable situation where children can "age out" of early intervention teams and will also help to tackle the current waiting lists, which we all know are at an unacceptable level.

I have requested that the HSE pause the removal of existing special schools-based therapy posts to allow for additional engagement at local and national levels to ensure full clarity for all stakeholders. Another important step is the recruitment of additional therapists. In that regard, I have secured funding for 100 new therapy posts. Recruitment for these has already started.

At the start of this month, I announced our intention to develop an autism innovation strategy under the remit of the Department for Children, Equality, Disability, Integration and Youth. The strategy's focus in the short term will on delivering tangible solutions to the challenges, needs and experiences of autistic people in a number of key areas. There have been questions about what "innovation" means and why it was chosen over "empowerment". For me, they are interlinked. The four key pillars of the strategy will be health, education, employment and housing. The strategy's aim is for each pillar to pinpoint and develop innovations in its respective area that can help to empower people with autism. To the Labour Party I say that I have been taking notes in recent months. One cannot achieve empowerment without action. These innovations will help to make up those actions. I have put the focus on the innovations because, without them, we cannot deliver on empowerment.

I am excited about the autism innovation strategy and what I hope it will achieve. The first step is to establish a working group for the strategy, which I will chair. This group will begin the planning of the strategy and identify the key innovations to be included. This process will require a cross-departmental approach and I look forward to working with my ministerial colleagues in the Government on same.

For the strategy to be successful, stakeholder consultation is vital. We need people with the lived experience to help to inform where and what actions are needed. I assure the House that meaningful stakeholder engagement will be a cornerstone of this process. I also confirm that I hope to initiate the expressions of interest process within the next month.

I welcome the opportunity to announce a new autism initiative that I have been developing with the HSE over the past number of months. Later this year, we will establish an autism phone helpline on a pilot basis. It will be a major support to autistic people of all ages. Once in operation, the helpline will aim to answer general questions about autism, highlight where and how people can access support services in their local areas, talk through how to go about explaining autism to other people, and provide information on how to access welfare services, community health care, employment and so on. I look forward to working with the HSE autism programme board on the delivery of this. In particular, I thank Ms Breda Crehan-Roche and Mr. Bernard O'Regan for the support they have given me in recent months during the work on this initiative.

The Government is fully committed to the principles of the United Nations Convention on the Rights of Persons with Disabilities that relate to the participation and involvement of people with disabilities and their representative organisations in the development of policy. The recently established Disability Participation and Consultation Network has been created for that purpose. I note that the network's membership includes people with autism and organisations representative of people with autism. AsIAm is a grant-funded member of the network and central to its operation.

In respect of the motion’s calls for legislation, as Deputies will be aware, work is advancing to commence the Assisted Decision-Making (Capacity) Act 2015 by June 2022. It was great to be part of the recent decision support service event earlier this month.

Improving disability services for all children with additional needs is a priority for the Government. I am confident that this process is well under way and that we are working our way towards having services readily accessible for all children and young people who need them at any stage in their lives. I have taken note.

6:10 pm

Photo of Michael MoynihanMichael Moynihan (Cork North West, Fianna Fail)
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I welcome the opportunity to speak on this timely debate on autism. It is refreshing that the Minister of State has agreed to accept tonight's motion, accepting that we are in a very difficult position from the get-go.

The mooted withdrawal of the speech and language and occupational therapy from special schools has been paused. I welcome that initiative by the Minister of State and the HSE. While it is now being paused, what is happening next? Will the services of the occupational therapists and the speech and language therapists be retained within the special schools? It is crucial that they are retained within the schools. That is the structure for them and not having them off-site, giving rise to further transport issues. I appeal to the Minister of State to ensure that the pause, which I welcome, becomes permanent.

There are structures for State-provided transport services and they should be delivered. The management of the school, the parents, the advocates on behalf of the children or the public representatives should not need to constantly contact the Department of Education over transport issues. They should be rolled out.

Given the challenges for people with disabilities and special needs, the State should be trying to break down the barriers to make it easier for them to access information and to access supports rather than making it more difficult. Collectively and individually we have made it more difficult and that attitude must change. If as a result of this debate, we agree to change the attitude by the State to families and people who have disabilities, it would be a significant step forward. It would be a psychological step forward on some of the issues which have been exposed recently. It is important to see that attitude change. On the Oireachtas Joint Committee on Disability Matters, we have a fantastic group of people working together. Their attitude is firmly to bring forward ideas to improve the lived experience of people with disabilities and those who live with them.

Photo of Seán SherlockSeán Sherlock (Cork East, Labour)
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I welcome that my party has tabled this motion. I welcome the fact the Minister of State, Deputy Rabbitte, is here to address the issues specifically, as is her colleague the Minister, Deputy O'Gorman.

The Minister of State referred to 1,860 cases. I ask her to respond to this later in the debate. The HSE has advised me that on 8 April, the number of overdue applications for assessment of needs was 5,078. On the face of it, there seems to be a contradiction between the figures the Minister of State mentioned this evening for the numbers who are waiting and the figures supplied to me by the HSE. It is a major issue to have 5,078 children overdue for assessment of needs. I would be very grateful if the Minister of State could respond to that. If there are now only 1,860 cases, that would indeed be significant progress. While I do not wish to be cynical, the Minister of State will forgive me if I question the figures presented to us tonight. I seek further clarity on that.

We were forced to table tonight's motion because thousands of children throughout the State still do not have access to follow-on services. For instance, the number of patients under the age of 18 awaiting audiology treatment in February 2021 was 9,486. Within that, the community healthcare organisation, CHO, with the highest number was CHO 4, covering Cork and Kerry, with 2,118 awaiting audiology follow on services.

The number of patients under the age of 18 awaiting occupational therapy was 18,753. Within that, CHO 8, covering Laois, Offaly, Longford, Westmeath, Louth and Meath, was the highest with 3,760 awaiting services.

For dietetics, the number of children waiting for treatment in February 2021 was 4,232. The area with the highest number was CHO 5, covering south Tipperary, Carlow, Kilkenny, Waterford and Wexford with a waiting list of 1,174. These are all children and young people under the age of 18.

Approximately 14,000 children were awaiting ophthalmology treatment and the area with the highest number was CHO 2, covering Galway, Roscommon, and Mayo, with 4,842 people waiting for ophthalmology for follow-on services.

For physiotherapy, the figure was 10,000 as of February 2021. The area with the highest number was CHO 7, covering Kildare, west Wicklow, Dublin west, Dublin city south, and Dublin south west, with approximately 2,600 waiting.

I appreciate the point the Minister of State has made on the focus on assessment of needs. I appreciate the progress that has been made. We acknowledge that the Minister of State, Deputy Rabbitte, is the first Minister in a number of years to have tackled the lethargy within the HSE on this issue. It is extraordinary that a Minister of State has to push back against officials within the HSE, who do not want to deliver these services and will find every excuse not to. We wish her well in that regard.

However, this is about children. Notwithstanding the arguments that have been made about assessment of needs and the methodologies which have been critiqued by psychologists regarding how that list has been dramatically reduced and if we accept at face value that they have been reduced, there is still the significant issue of the follow-on services. Some €7.8 million was spent on this and I welcome that the Ministers were able to secure this amount. However, the HSE paid €8.7 million to Deloitte, EY, KPMG and PwC for consultancy services during the pandemic. That figure came in the response to a parliamentary question I received last week. We need to start prioritising things in the HSE.

Photo of Duncan SmithDuncan Smith (Dublin Fingal, Labour)
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I will speak in a moment about the impact the pandemic has had particularly on children with autism. However, one aspect of the Minister of State's speech leapt out at me as being very positive. It reminded me of a conversation I had with a friend of mine whose son has autism. It was some years ago around 2014 when I had just become a councillor. He asked me, as someone with vim, vigour and gusto just starting out in public life, what I would do to assist those with autism. I asked him about his experience, and he said he did not know where to start. He did not know what the first step was.

The Minister of State's speech refers to the establishment of an autism telephone helpline on a pilot basis. If it works, it will be a very important first step. People need a first step in order that they can take other steps. That is not to say each of the next steps will be easy; they will not. I know this because the subsequent conversations I had with my friend were about how difficult things are and how everything is a fight, but that first step was the most difficult. It is encouraging to hear that a helpline is coming on stream. I hope it will achieve its purpose and people will know where to go if they have concerns or worries. From there, hopefully, the journey will be easier than it has been for so many people. Things have been difficult, in particular this past year during the pandemic. Every week, Members speak about the difficulties being experienced by a particular cohort of people or industry. Everyone has had a difficult time.

In August last year, DCU conducted fascinating research, of which I am sure the Minister of State, Deputy Rabbitte, is aware. It found that 74% of parents of a child with ASD reported that they would face unique challenges over the weeks as restrictions were being lifted. We can expect that the same will happen again with the lifting of the current restrictions. Owing to months of limited social interactions, some children had difficulties with social skills and, for others, skills had regressed. Regression has been a major problem in the context of the pandemic.

As the current restrictions are eased, the environments to which children will be returning will be different, with masks, social distancing and other sets of rules. We need to be cognisant of this. While many of us are complaining about what are minor and petty inconveniences, for others, they are life-changing challenges. We need to be of cognisant of that too. The DCU research also found that there had been a 61% decline in relation to particular abilities and skills. Parents who took part in that research noted that in 31% of children there had been a decline in ability to self-regulate their emotions. The pandemic is having a huge impact on parents and families, which, as a society, we will not see until the restrictions are lifted. We need to be sensitive to and cognisant of that.

The shift to online learning in the past year has presented significant challenges for children and families, especially for families with autistic children who often struggle with changes in routine and the engagement required for remote instruction. Some 18% reported that children are experiencing a decline in motivation to engage in activities, including school work. Given the periods of necessary school closures, the move to online learning and the vast shift in environment and routine, negative change in these abilities is to be expected. When we say we will, in future, live in a world of Zoom, Teams and so on and there is a new way of doing things, that might be easy for us and it might make life a bit for convenient for us, but it is a lot more inconvenient and difficult for people with autism, particularly for children with autism. These little changes that may be inconsequential to us are huge for other people. We need to be cognisant of that.

6:20 pm

Photo of Kathleen FunchionKathleen Funchion (Carlow-Kilkenny, Sinn Fein)
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Sinn Féin is happy to support the motion. I thank our colleagues in the Labour Party for bringing it forward. I was delighted to hear the Minister of State mention the autism strategy. I had often wondered what had happened to it. People will not be shocked to hear me say that two years ago, on World Autism Day 2019, I introduced a motion on behalf of Sinn Féin on development of an autism strategy, which was unanimously passed. It is important we have that strategy. It has been missing from this country for too long. It remains my understanding that a committee was to be established and sit for approximately six months to hold public hearings and consultations on the issue. It is important that happens, but it is only one small step.

All of us are regularly contacted by parents who have a child they believe may have autism and they are struggling to get an assessment or have just received an assessment. We cannot say often enough that everything that needs to be done is a battle and that is wrong. We often refer to particular situations as a crisis. It is fine to describe something as a crisis if it is happening for only a short period and it is was unforeseen, but this has been happening for years and so it cannot be described as a crisis. We know this is happening. We know that there are children who have autism that cannot access an ASD placement and that for those who do access one, it is usually miles from their home and they are not eligible for transport. We have to question how fair and realistic it is ask a child to endure a really long journey to and from school every day. We know this is happening.

Children who are diagnosed with autism are treated as second class citizens. They cannot get the services they need, including speech and language therapy, occupational therapy, class placement, school transport, additional help in school and so on. It is wrong and unfair that access to all of these services is dependent on someone who is willing to listen and be on board and support families. I often hear people say that without X or Y, they would be lost. We have an excellent social worker in Kilkenny who is involved with the early intervention team. Time and again, people say to me that only for her they would be lost. That is not acceptable. These are rights that people have and they need to be respected.

How many more debates must we have on this matter? I agree with Deputy Sherlock's point in regard to the Minister of State. I, too, genuinely believe she wants to what is right and that she has been trying to do that, but we need to see real action. We cannot have a situation where children are placed on a waiting list for an assessment and then placed on another waiting list for occupational therapy, physiotherapy and speech and language therapy. Parents are tearing their hair out trying to do their best for their children.

In regard to ASD schools, we rarely talk about them because they are so scarce. There is one ASD school for the whole of Kilkenny, city and county, which is unacceptable. When children move to primary school, they face another battle. When they move on to secondary school they face a serious battle to get additional help. To get help at exam time, a student has to have a written diagnosis. Often, children who have a diagnosis and are in mainstream school have to go back to the drawing board to get a different diagnosis to access an ASD class or school. It is not rocket science. There are so many groups and parents that can tell us how to do this correctly. An autism empowerment strategy is important. This strategy works well in other countries and we need to start looking to those countries.

I do not have time to speak at length on adult services, which is another battle. There are not many who are lucky to have an adult service in their area when they move from children to adult services. There is a job of work to do. I welcome that we are having this debate and I hope we see some action from it.

Photo of Violet WynneViolet Wynne (Clare, Sinn Fein)
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This motion deals with a matter that, as a parent of a child with autism, is close to my heart. Today, I speak as a Teachta but also as a mother directly impacted by this issue. The provision for autism services - by which I mean the distinct lack of provision for autism services - is one of the main reasons I felt compelled to enter the political domain in the first instance. As all parents will know, as a parent one wants to protect one's children and to surround them with as much love and support as possible. It is hard, therefore, to watch them struggle and suffer and be unable to fully enjoy their lives. As a parent, one knows that one cannot right every wrong, but to live in a society where the Government does not get it and consistently does not prioritise autism services adds insult to injury.

A motion was tabled in 2019 by my colleague, Deputy Funchion, on an autism empowerment strategy. That motion was the result of significant research that drew on proven international best practice models and approaches, particularly the Persons within the Autism Spectrum (Empowerment) Act 2016 in Malta, which established a national autism advisory council in that country. Deputy Funchion's motion set out a clear framework for taking equivalent progressive strides in our society, including the establishment of an all-party Oireachtas committee that would be mandated to produce an autism empowerment strategy for Ireland within six months. The motion was passed with strong cross-party support but the committee was never established. What message did it send out when that vote was not followed through with action? In fact, that lack of action is a recurrent theme and it cannot continue. It leaves people furious and frustrated, and rightly so, to see their Government fail them time and again. The very political system set up to protect their interests denies them their rights. That needs to stop.

Action must be taken to address the waiting times for the assessment of needs for children in this State. A European-wide study on ASD and early intervention published in 2018 identified that 50% of parents have access to intervention within one to three months of diagnosis. Meanwhile, the average waiting time in Ireland to access an assessment is a whopping 19 months. This is an indictment of the State, which is falling drastically short of the time parameters set out in the Disability Act 2005. That legislation is now 16 years old and is still not fully commenced. There is a recurring theme.

Time is moving on but the services for people with autism in this State are not. What is the point of law if it is not applied? The 2020 report by the Ombudsman for Children, entitled Unmet Needs, re-articulated the urgent need for the commencement of the 2005 Act and changes to the Education for Persons with Special Educational Needs Act 2004. The latter is 17 years old and, like the 2005 legislation, has not been fully implemented. In a joint Oireachtas committee meeting to discuss the ombudsman's report, my colleague, An Teachta Ward, pointed out that in the North - in Derry, for example - children are given intervention while they await assessment. They and their developmental needs do not pay a price because of the inefficiency of public provision. All of Ireland's children should be treated equally in this regard.

6:30 pm

Photo of Martin BrowneMartin Browne (Tipperary, Sinn Fein)
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I welcome the opportunity to speak on this important matter. The challenges facing people with autism have been raised by Sinn Féin in this House on several occasions. Two years ago, we made a number of proposals for an autism strategy, including the need for a dedicated autism committee. We are back here again, however, pressing the Government to stop failing families across the country.

Since we put forward our proposals, the obstacles facing people with autism have become even more pronounced. This is evident as we deal with the consequences of the Covid crisis and the recent revelations that the Department of Health has been collecting secret dossiers on the families of children with autism who took legal cases against the State. I have been dealing with a number of cases where parents are facing roadblocks to getting assessments for their children. One parent who contacted me earlier this year told me of the difficulties she encountered in getting her child assessed for ASD. The parent in question was attempting to get her child treated through CAMHS for a separate issue. She had to get her child to ruled out for ASD before CAMHS would even entertain having the child on its books. That was roadblock number one.

The second obstacle this parent encountered was in getting an appointment. She told me the assessment under the public system would not have taken place until September 2021 at the earliest. To ensure her son would get the services he needed, she had to get him assessed for ASD privately, at a cost of €2,000. This is not an isolated case. When I inquired about it, the HSE pointedly told me that children do not need a private ASD assessment but families may elect to seek one. With all due respect, parents in this situation do not elect to seek a private assessment. They find themselves with little or no choice but to do so because the public waiting lists are so long and time is of the essence when it comes to getting treatment for their child. It was a completely disingenuous response from the HSE. The legal requirement to carry out an assessment of need within six months is not being taken seriously and, as a result, the waiting time is now 19 months.

People are sick and tired of facing roadblock after roadblock in seeking a service for their children. As the Labour Party motion points out, the delays that have resulted from the Covid crisis have made an already bad situation even worse. The autism workers I have spoken to say that it is only when something focuses attention on the needs of people with autism that their voices get heard. Many of them feel that, most of the time, the shortcomings in services are left in the lap of the gods. One worker told me today that what is needed is ongoing, active involvement on the part of policymakers. People need to know they are being listened to an ongoing basis. They must have confidence that what they have to say will be addressed and acted on. It is for precisely this reason that the Labour Party motion, like the Sinn Féin motions, was brought before the Dáil. Otherwise, these issues would fall off the Government agenda.

I conclude by referring to the revelation that secret dossiers are being kept on the families of children with autism who took legal cases against the State. The motion calls for a full independent review into this matter. I fully support that proposal. There should be no shortcuts and no cases left unaddressed. The positive contribution people with autism make to our society is not sufficiently recognised and supported. Fortunately, there are wonderful organisations that embrace the talents and contributions of autistic people. Autism Awareness Roscrea and the South Tipperary Autism Support Group are among them. We must ensure that organisations such as these receive the right level of commitment from the Government and can continue to support people with autism in their communities.

Photo of Pauline TullyPauline Tully (Cavan-Monaghan, Sinn Fein)
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I fully support the motion tabled by the Labour Party and commend the party on so doing. It deals with a very important issue that I expect has been raised with every Deputy.

I want to highlight a number of school-based issues affecting children with autism. Many children diagnosed with autism are given a place in an ASD unit or special class only to find that the person teaching them is a mainstream teacher and does not have a qualification in special educational needs, SEN. Some of those teachers will do additional courses to help them meet the needs of the children in the unit. Frequently, however, by the time they have completed the courses, they are moved into mainstream classroom teaching and replaced by a different teacher who, again, is not qualified in SEN, and the process begins again. In the meantime, the children are not being educated. I have been informed that, in certain schools, teachers are told that if they teach for two years in the ASD unit, they will thereafter be guaranteed a permanent job in mainstream education. That is totally disgraceful. No one should be allowed to teach a special class or in an ASD unit unless he or she is fully and properly qualified in SEN.

I was contacted recently by a constituent who has three children with autism, all of whom are enrolled in a school approximately 30 minutes' drive from their house. At the time her eldest child was ready to start school, there was no placement in a special class or unit anywhere nearer to the home. Transport to the school is provided for her two eldest children. However, when she applied for a ticket for her youngest child, she was told he does not qualify because he is not attending the nearest suitable school. Is this parent expected to send her children to different schools, which would mean different buses having to take them there? How does that make any sense, common or financial?

I have discussed the home tuition provision with tutors, many of whom have master's and higher qualifications in autism studies. However, they are given only temporary Teaching Council numbers and the council insists they must undertake and obtain further qualifications to be eligible for a permanent number. The people I spoke to are highly qualified in their area. Will the Teaching Council include qualifications in autism studies in its criteria for getting a council number? Anybody with a degree can obtain a teaching number on a temporary basis and give home tuition to a student with additional needs. That is extremely concerning and the sector needs to be regulated.

Another issue of concern is that students have been expelled from special schools because of behavioural issues. Moreover, they have been expelled without their school seeking the advice or intervention of a behavioural analyst to deal with the issues and allow the child to continue his or her education. Will the Department of Education start to fund and employ behavioural analysts to work with staff and children in schools where there are behavioural issues?

Photo of Dessie EllisDessie Ellis (Dublin North West, Sinn Fein)
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I welcome this motion on a proposal for a national autism empowerment strategy, which I am happy to support. My constituency of Dublin North-West has a high number of children and young people with autism but a severe lack of services, resources and school places. The situation is acute at both primary and secondary level. The Sinn Féin team in Dublin North-West and I are in contact with, and have been assisting, many parents from across the constituency with the problems they face in getting proper access to school places and services for their children.

From my meetings and conversations with parents, I am very aware of the everyday challenges they face. It is clear there is a lack of leadership coming from the Department in determining the implementation, use and identification of resources for children with autism and special needs. We also need clarification on certain processes, a clarification that is lacking at the moment.

In response to a question from my colleague, Deputy Chris Andrews, last October asking the Minister to outline the criteria used by the Department of Education in making a determination to use section 37A of the Education Act, the Minister did not clarify the actual mechanisms for such a determination. According to the Minister of State at the Department of Education, Deputy Madigan, the National Council for Special Education has primary responsibility for co-ordinating and advising on education provision for children nationwide. However, on-the-ground experience suggests there appears to be no real strategy or planning based on any tangible data from the NCSE of where autism spectrum disorder units are needed. Contrary to the Minister's assertions to my colleague, Deputy Andrews, there is no real engagement between the NCSE, parents and schools. This is probably why there are such major gaps in the provision of services across Dublin North-West. In fact, Ballymun is one of the worst-served communities when it comes to autism and special needs and has no ASD units in the primary schools. The Minister and the Department need to be proactive and should make determinations in respect of the provision of ASD units locally because it appears that the current system is not working.

Parents I have spoken to have asked that section 37A of the Education Act be invoked to provide the necessary facilitates in Dublin North-West that are clearly lacking. It with within the power of the Minister to do so. The situation in Dublin North-West warrants such an intervention.

6:40 pm

Photo of Sorca ClarkeSorca Clarke (Longford-Westmeath, Sinn Fein)
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I welcome the opportunity to speak on this issue. It affects thousands of families throughout the country. Like my colleague, Deputy Wynne, I am proud to say that I am an autism mammy. There is a perception that living with someone with autism is a constant burden and that it is always difficult or draining. That is simply not true. People with autism are among the most amazing people we meet but they face challenges on a daily basis. The real difficulties do not come from diagnosis or from the person in question but from outside. They come from a society that fails to fully understand what autism is and from a system that continually puts obstacles in the way of those affected. It is a system that to some minds is almost designed to stop these individuals from reaching their full potential. That is a damning thing to have to say. However, as a parent, I can tell the House that I have seen it first-hand. I have walked that walk and I know what it is like. When we take away the avenues to success of a person we take away that person's power and voice. That is absolutely unforgivable.

If the Minister is to focus on one area it should be on pathways to education, employment, healthcare and independent living. These are absolutely essential as are early assessment and integration in our school system at a young age. We need to protect the rights of these people whether in a school or workplace setting. Exploitation and harassment are taking place and this needs to stop.

I do not have time to go through the rest but I will leave the House with one thought. One of the most difficult conversations I have ever had with another parent of an autistic child was one that started with her telling me that she could not go to bed because she did not know how she was going to face the following day. That is the level of impact a diagnosis of autism or waiting on a diagnosis of autism can have on the parent of a child.

I have had conversations with grandparents not from my constituency but from throughout the country. These people have called me looking for guidance. They have asked whether there is a book available or something that can help them to help their children in supporting their children in turn. There is a major gap and it needs to be filled. We can do better and we have to do better. It begins by committing to ourselves that we will be better. No child, whether my child or that of Deputy Wynne, deserves to be classed as a second-class citizen.

Photo of Gary GannonGary Gannon (Dublin Central, Social Democrats)
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My thanks to the Labour Party for bringing forward this important Private Members' motion. My thanks go to the previous contributors for outlining their personal experiences on the issue as well. Those of us in the Social Democrats are highly supportive of the motion.

An emerging theme in most of the contributions in the Dáil in recent months has been the issues that we cannot unsee from the pandemic. I am referring to the inequalities and inequity made all too visible during the pandemic and too tangible for us to continue to ignore in our society.

Tonight's motion is somewhat different. People with autism have had an incredibly difficult time during the pandemic. Routines and social structures have been upended from the closure of schools and the removal of services. The eventual reopening of school buildings rightly prioritised students with disabilities but wrongly excluded students with disabilities in mainstream classes. This is significant for children with autism because in 2017 the National Council for Special Education estimated that 65% of children with autism in school were in mainstream classes. We also learned of the incredible report of secret dossiers compiled and maintained in the Department of Health containing sensitive, personal and private information on children with autism and their families.

People with autism and their families suffered long before the pandemic and have always had to fight for basic rights and entitlements. The relationship with the State has been unnecessarily fraught and adversarial. The country is consistently ranked among the lowest in Europe when it comes to people with disabilities experiencing underemployment and unemployment and at risk of poverty and social exclusion. It is shameful but fitting that we were the last EU member state to ratify the United Nations Convention on the Rights of Persons with Disabilities in 2019 and that today many provisions within the Education for Persons with Special Educational Needs Act 2004 remain outstanding. For example, the special education appeals board, to which a decision made about a person with special educational needs can be appealed was established in 2006. Still, the board is not yet in operation. The way people with autism have been treated over the course of the pandemic is a continuation of collective experience that was ongoing pre-pandemic.

Any trust that existed between people with autism, their families and the State was fully broken when the practice of the Department of Health and the Department of Education in compiling and keeping secret dossiers on children with autism and their families emerged. It was reported in late March this year thanks to the courageous actions of whistleblower Shane Corr. There is no trust that an internal review can restore. How could it? Only an independent statutory investigation is appropriate and it needs to take place urgently. I support completely the calls from families and advocacy charities like AsIAm and the Disability Federation of Ireland for nothing less than that to take place.

The Private Members' motion references the incredible report by the Office for the Ombudsman for Children, entitled Unmet Needs, which was published last October. I want to reference the stories of several individuals highlighted in the report. Lucy is non-verbal and had a diagnosis of autism spectrum disorder combined with mild general learning difficulties. She has a communications device but neither Lucy nor her family have been taught how to use this device as of yet. She still continues to communicate using limited amounts of sign language. Lucy was recommended for speech and language therapy and physiotherapy in 2015 following an assessment of needs. However, at the age of 11 years she has still not received the clinical services recommended to her as a six-year-old. That situation is absolutely unbecoming of a modern republic.

The report also highlights Andrew's story. His mother was told Andrew would have to wait one year to access a psychological assessment. This impeded his mother's ability to access the ASD specialist preschool for her son. Michael was non-verbal with suspected ASD. His mother was told to go to the Circuit Court to force the HSE to implement the assessment after waiting 19 months for an assessment of needs.

How many in this Chamber have heard of similar experiences? What is extraordinary about the stories of Lucy, Andrew and Michael is how common they are. Often in this Chamber we are accused of trying to point-score or make things about politics that should be about people. The experience of families and children across the country in trying to get appropriate and timely diagnoses, intervention and support is not about point scoring. It should not be political. Anyone here who has made a representation for a family desperate to get an assessment of needs or get the services or support from an assessment knows that the system is broken, as do all those in the system. We need to stop equivocating. Parents have had to fight tirelessly and consistently against the State to get basic rights and support for their children. This is true in the case of healthcare, education and social protection.

TheIrish Examinerreported in early March 2021 that almost half of all applications last year for disability allowance were turned down but almost two thirds of appeals were later revised or granted. It seems entirely unnecessary that it has to be so difficult. On the domiciliary care allowance, which only extends to children up to the age of 16 who have a disability which requires ongoing care and attention, in 2019 more than 70% of families were denied their initial application for the monthly domiciliary care allowance for their child, and had the decision overturned on appeal. There were 3,630 appeals received under the carer's allowance in 2020.

The Department will say that overall only 1% of claims are appealed annually, but these claims are disproportionately among those living with or caring for people with disabilities.I have no idea why people with autism and their families are continuously asked to wait for a year, 19 months or, in most cases, several years for an assessment of needs, the provision of services, or autism spectrum disorder, ASD, places.

It has been 16 years since the Education for Persons with Special Educational Needs Act 2004 and it is still not fully implemented. They cannot be asked to wait any longer for us to take action. I finish by thanking the Labour Party for bringing forward this motion and I strongly urge the Government that if it is not going to oppose this motion and if it accepts it, to act upon it because to do otherwise would be simply disingenuous.

6:50 pm

Photo of Gino KennyGino Kenny (Dublin Mid West, People Before Profit Alliance)
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I am sharing time with Deputy Barry if he is present. I welcome the Labour Party motion on autism services. It is a very well-thought-out motion and nobody could argue with the contents of it.

A number of Deputies from Dublin Mid-West recently met the Minister for State in respect of ongoing issues in community healthcare organisation, CHO, 7, which I represent as part of Dublin Mid-West. It was quite a hopeful meeting, but I will hold my counsel. CHO 7 has one of the longest waiting lists for basic services for children in the country. I do not doubt the Minister of State’s bona fides in trying to challenge and address that for the many families not only in CHO 7 but throughout the country. This issue has been raised countless times in my five years' tenure here.

I want to go back to 14 of 15 months ago, and I am not talking about the pandemic but about the general election that took place on 8 February 2020. In that general election the voice of the people spoke. The narrative of that general election was an earthquake in some ways and was that the incumbent Government and previous governments had not delivered on public services. When you drill down on the reason there was such a seismic change in that election, it concerned public health and that when people required services in their time of need, they were not there. People had cracked and wanted something very different.

The pandemic has compounded much of the historical inequalities in Ireland. One of those inequalities is about intervention around autism and the services people should get but cannot. Waiting two or three years for basic services for children in speech and language therapy and physiotherapy is just not acceptable in 21st century Ireland. The Disability Act 2005 stipulates it should take six months for an assessment of a child to take place and for him or her to get the services. There have been numerous cases, and there are ongoing cases in the High Court, where families are bringing the State to court for being in breach of this Disability Act. That is a stain on this and previous governments. All Deputies have received these very distressing phone calls where families are looking for and cannot get the basic services for their child. Sometimes you feel useless when you say, "I will make a phone call or send an email but I know what the answer will be", which is that person will be waiting probably up to two years. It is really heartbreaking for the families.

These families want better outcomes and services. These are very basic things. It is to be hoped during this Minister of State’s tenure she will address some of the very real issues that impact deeply upon families when they need services the most. ASD units have been a great success in Ireland but there are not enough of them and they are oversubscribed, not only in Dublin Mid-West but also in other parts of the State. These units are very good at engaging with children and the whole environment is brilliant but we need more of these settings. Better outcomes and early intervention are a no-brainer and have better results.

As I said, I hope during the Minister of State’s tenure when she has responsibility for this area she will address the deep inequalities on this issue. I believe she will but the proof will be in the results. Sometimes Dáil motions can be a form of theatre but the real progress will be when families do not have ring people like us. Families should not be contacting Deputies for basic services, let us be honest. They should be getting that service in time, not in two years, but when it is there. That is all families are asking for. I hope at the end of this process that families for once and for all can get the services that they need.

Photo of Seán Ó FearghaílSeán Ó Fearghaíl (Ceann Comhairle; Kildare South, Ceann Comhairle)
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I thank Deputy Kenny for that thoughtful contribution. As his colleague is not here we will proceed with our next contributors, who are Deputy Canney sharing with Deputy Verona Murphy.

Photo of Seán CanneySeán Canney (Galway East, Independent)
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I thank the Ceann Comhairle. I welcome the opportunity to speak on this very important issue. It is very timely because this is national autism awareness month. Autism and autistic citizens have been let down collectively by us here in this State. I support this motion. It is timely and follows on from the Bill which the Regional Group and I reintroduced or reinstated in the Dáil yesterday. This Bill, called the Autism Spectrum Disorder Bill, was introduced by former Senator James Reilly in the term of the previous Dáil. It passed the Seanad and is now on the Order Paper for the Dáil.

The purpose of the Bill is to address the inconsistency which exists throughout the State in respect of both the availability and type of services which are accessible to children and adults with autism spectrum disorder. The Bill is to provide for the development and implementation of a cross-departmental multi-agency autism spectrum disorder strategy. Such a strategy will set out how the needs of persons with autism spectrum disorder are to be addressed throughout their lives. The Bill will also decide upon the content of the strategy, assign responsibility for its implementation, provide a transparent process for monitoring the implementation of the strategy, and provide guidance on the implementation of this strategy. The Bill will further provide for the collation of data on autism spectrum disorder and for the initiation of a public awareness campaign on autism spectrum disorder. What I have heard in this debate can all be covered by this Bill which can be enacted fairly quickly, can be taken on by Government and brought through the Houses. In the previous Dáil, it had the full support of every party and made its way through the Seanad. Amendments may need to be made to it and we can do that.

I am a public representative since 2004.

As I stated at the Joint Committee on Disability Matters and as Deputy Gino Kenny noted, there are some things one comes across in public life where one is not very proud of what is going on. I believe that citizens who have autism have been let down by the State and I am not proud of that. My cross-party plea is for empowerment by action, a phrase I heard earlier. The best action we can take is to implement the Autism Spectrum Disorder Bill without delay.

7:00 pm

Photo of Verona MurphyVerona Murphy (Wexford, Independent)
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I thank my Labour Party colleagues for tabling the motion. It further endorses the reintroduction of the Autism Spectrum Disorder Bill 2017 which, as my colleague stated, was originally presented to the House by former Senator James Reilly. It was reintroduced yesterday by Deputy Canney, along with me and my colleagues in the Regional Group who co-signed it. I hope the Bill and the motion get cross-party support in order to fast-track the supports of which ASD sufferers and their families are in dire need.

The rapid prompting method, RPM, is a little-known but hugely successful method of dealing with non-verbal autism sufferers. It gives non-verbal autism sufferers a voice, using digital word spelling to deliver the message. I spoke to Eoin Ó Donnagáin, the principal of Kilrane National School in Rosslare. The school has a special needs autism unit that uses RPM but it is not funded by any Department. Rather, it is funded by the Kilrane National School special needs group, the time and generosity of which knows no bounds. In 2014, Senator Mullen asked that RPM be promoted and funded and targeted at children with autism. The answer he got was "No". However, the need for it has never been greater than it is now.

Covid has been a total disaster for those with autistic children, who have been far more badly affected than other families have. The reaction of the Government in instituting the longest lockdown in Europe, if not the world, utterly destroyed - that is the only word that can describe the effects of the lockdown - any semblance of normality, routine or progress for these families and will affect them for years to come. The rest of the country may be looking forward to society opening up, but these families are not. The regression of ASD sufferers will take years to repair. The Government owes it to these children and their families to provide, at the very least, a funded pilot programme on RPM. I agree with previous speakers that the Minister of State, Deputy Rabbitte, is hard-working, knows her job and is not afraid to get results from her Department. I commend her on that. I know how hard she works and the progress we have made on issues on which I have engaged with her. I ask her to address this issue. I have faith she will drive it on.

I have been in touch today with the mother of a ten-year-old boy in Wexford who, unfortunately, is now unable to access CAMHS. He has ASD and has been put on medication which is successful. However, he is ten years old, weighs 13 stone and has tried to take his own life. His mother is also suffering and feels like a failure but she has not failed her child. She has saved his life. It is the system that has failed them both and that must stop. I am wholeheartedly pleading with the Minister of State to help these families. The Government must not continue to ignore their needs. I ask her not just to support the motion, but also to support the Autism Spectrum Disorder Bill and get the strategy going.

Photo of Michael CollinsMichael Collins (Cork South West, Independent)
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Parents of children with a dual diagnosis of autism and intellectual disabilities do not feel represented by Inclusion Ireland at talks and when strategies are being implemented. They feel under-represented because the parties do not understand or cater for both autism and intellectual disabilities. Instead, each supports one or the other. The challenges faced by those with a dual diagnosis have not been highlighted enough. The consequences leave vulnerable families unheard and left to manage solo, which has a significant impact on the well-being of the families as a whole. The restructuring of services has put a stop to the few services families were receiving from the public supports.

I know of a child, Jack, who has been self-harming and hitting himself in the head daily since last January. One year later, his family are waiting for him to be seen by the Brothers of Charity psychology service and CAMHS. His parents are desperate for support in the interim. However, there is no psychiatrist in Ireland who will see a child under the age of 18 with Jack's diagnosis. Such children have to be seen by CAMHS, which is clearly understaffed. The result is that another family has been left to try to cope with the reality of watching a child turn on himself violently.

Across Ireland, many children are still in the wrong school settings. Many children with a diagnosis of autism need a special class separate from mainstream classes, while those with intellectual disabilities may need a place in a special school. These children regress and suffer identity issues as well as mental health issues as a result of their misplacement. Staff try their best to support the needs of the children but struggle to do so due to the lack of support, services and training.

The Jack & Friends centre for autism opened in Bandon, west Cork, in 2019, at which stage it supported 60 families. It now supports 300 families in County Cork. It does not have any paid staff; its staff are all volunteers. It offers free counselling to parents and affordable occupational therapy and speech and language therapy to children. It does so by arranging bag packs and bucket collections. These parents of children with complex needs carry out this fundraising in order to keep the premises they rent for €1,000 per month open. They offer weekly social groups for children to build their self-esteem and confidence among their peers in a safe and accepting environment. It is an affiliated charity to the National Federation of Arch Clubs, which caters for people with special needs and supports approximately 40 clubs around Ireland. Prior to the pandemic, it was keeping its head above water - just about - through hard work and word and dedication, but it is now struggling to survive financially and keep this vital service going. I plead with the Minister of State to help in some manner because the group is looking after a massive catchment in Bandon and the surrounding area. The group cannot apply for funding as it is a sub-club and, as such, could not avail of any supports the Government issued for not-for-profit organisations in the past year. It needed a door to stay open. It needs help.

July provision for children with special needs is welcome and necessary. However, the vast majority of schools do not run this provision in-house. This results in families seeking suitable teachers to carry out the hours with the children in the family home. A child with autism will benefit far more from remaining in the school environment to avail of the hours. I ask the Minister of State and the Department of Education to make it compulsory for schools to deliver July provision. It is important that it be provided on the school premises because the home environment is more difficult for children with autism. All Members know families with autism, who encounter many difficulties. I again plead with the Minister of State to consider the case of the Bandon centre for autism.

Photo of Mattie McGrathMattie McGrath (Tipperary, Independent)
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I too compliment Páirtí an Lucht Oibre on tabling the motion. I wish the Minister of State well, but anybody who tries to help on the issue of autism knows there are some shocking figures in this area, as I learned when studying the issue. The State has recently spent more than €8,000 on consultants and advisers from Deloitte and other companies but there are 5,018 people waiting for an assessment. The trauma, stress, anxiety, fear and desperation that parents go through with autistic children - some families have more than one - is heart-rending. As elected representatives, we feel powerless to help. It beggars belief that a town the size of Clonmel had no autism unit until recently.

I salute the boards of management, teachers and unions who have come forward. We had two units set up by Mr. Ryan for preschool. We had none for national or secondary school but we now have a wonderful unit in the high school in Clonmel operated exceptionally by Paddy O'Gorman and Brid Wilkinson, under the excellent tuition of their principal in the school. We have one in my school in Caisleán Nua, a new one in Burncourt national school and two being constructed at Clerihan national school. They are mushrooming out. The needs are there. I salute all the people with special needs and the people who go into that vocation to give love and care to those lovely, beautiful children.

I salute Nick Ryan-Purcell, a hero from Nenagh and a young man with huge talents. He has made a short film and came to this House to show it in the AV room. He has gone all over Europe showing his film and talking openly. He is now doing wonderful paintings and putting up wonderful scenes on Facebook and social media. I salute him, his mother and all mothers and parents because it is a challenge.

My late brother was a paediatrician and was very interested in issues of autism, dyspraxia, dyslexia and all those special needs. He had a particular love for it and is a big loss not only to his family but to the patients who loved him. We could do so much more. We have to cut out the red tape and the taking of notes and notes and notes. We saw an exposé recently where the notes were taken to fight court cases. There is a huge amount of money being used to fight these cases. Ní neart go cur le chéile. Put all our energies together with passion and vision to try and build these units and have more of them.

We have to examine why there are so many symptoms of autism in young children. We have to question that. Something has changed. When I was in school, maybe there were a number there but it was not apparent, certainly not to me. Maybe I was wrong. I will not say "epidemic" as that is the wrong word, but it is hugely worrying. People, including teachers, have come to me and said we have to investigate the causes. It is here, thankfully we can diagnose it now and I salute the people who diagnose it but the waiting lists are traumatic. The last 14 months have been traumatic. I have had parents ringing me whose children were incarcerated and they could not have their daily trips to the special school on the bus or to the playground or whatever. Untold regression has taken place in autistic people and people with special needs. It is time we opened the gates to let them out and let them live and supported them in the community. I wish everybody well who tries to make an effort in the right way. Forget the consultants, take out the barristers and the legal challenges, deal with it sensitively and compassionately and we will be a better country for it.

7:10 pm

Photo of Marian HarkinMarian Harkin (Sligo-Leitrim, Independent)
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I thank the Labour Party for bringing forward this most important motion on autism strategy and services. I fully support its recommendations and I am pleased to hear the Minister of State say she is supportive. All of us know from speaking with parents and carers the intolerable burdens that have been placed on families and caregivers over the last 14 months. On top of that, waiting lists have increased for many services during that time. As politicians, we all receive heart-rending emails and phone calls but perhaps one of the most difficult is when a parent is advocating for their child. They see the life chances of their child diminishing in front of their eyes and see their children moving backwards because they cannot access speech and language therapy, physiotherapy, occupational therapy or other services the child so badly needs. That is the most difficult phone call. One parent told me they spend a great deal of time and energy on assessment and when that is finished, there are no or very few services.

I have four emails here and I expect the Minister of State has many. These are from different parents and I received them in the last week. Each one tells a unique but similar story. I will quote part of one of the emails because, as we both know, the voice of the parent is stronger and more powerful than anything I could say. I have changed names to preserve anonymity:

My son Michael has Down's syndrome and autism. He has a fabulous personality, is full of life and mischief and brings joy to his siblings and to us, his parents. The biggest barrier we face in raising our child with autism is his lack of access to speech therapy. Michael is non-verbal and this can cause frustration for everyone and directly impacts his ability to learn and become a functioning, included member of society. For the past five years, myself and a group of parents in Sligo have been fighting for an appropriate level of therapy to be provided for all our children. We have been met with barriers and excuses from the HSE at every turn.

The next sentence is shocking but she wrote it:

The disdain and disrespect that has been shown by some ["some" is underlined] of the managers in the HSE is nothing short of disgraceful. It feels like we are looked down upon and should be thankful for anything we get.

I spoke to her and she emphasised that it is just some. Many will do everything they can but they do not have the resources. I can only imagine how difficult it must be to work under those circumstances. How can one provide a decent, humane, accessible service if one does not have the resources? She says: "I could count on one hand the individual speech therapy sessions my son has had in the last five years." In another sentence from another parent, she sums it up perfectly: "Some of the issues I have found in being a parent of a child with autism is the lack of quality continuous service."

There are positives in these emails. They speak highly of their local school and how, in many ways, the school has been the glue that held everything together. On foot of these and other queries, I put down questions to the Minister for Health regarding the numbers of children in Sligo and Leitrim currently awaiting assessment, treatment or therapy. I learned that 385 children are awaiting initial assessment, 84 are awaiting therapy and 444 are awaiting further speech and language therapy. Sligo and Leitrim are small counties and they are shocking numbers.

To be fair, the response from the HSE said some measures were being undertaken to reduce those lists and that is positive but the lists are so long that these extra measures will hardly keep pace with the demand, never mind cut the waiting lists. Part of the problem seems to be the difference between positions or posts allocated to Sligo-Leitrim and positions filled. Going back to speech and language therapists, 40% of the positions are unfilled. There are similar situations pertaining to social work, physiotherapy and occupational therapy. It is not as stark, but somewhere between 10% and 25% vacancy. These vacancy rates must be dealt with as a matter of urgency. It is soul-destroying for those who need to access the service and it places intolerable burdens on those who are trying to provide the service.

Before I came in, I got three phone calls because people knew I was going to speak about autism.

One particular comment from a mother stayed with me. She has a 14-year-old son and she spoke of her 14-year struggle. I will not go through what she said, but she was most reasonable. She is worn down and worn out, especially due to the lack of speech and language therapy. She told me she has listened to promises from HSE managers and politicians. She politely says she does not want to hear their voices; she wants to hear her son's voice. That says it all.

I know the Minister of State is working hard to improve an extremely difficult situation. Before I finish I want to emphasise to her once again the unacceptably long waiting lists for CAMHS. Families, teachers and carers are driven demented looking at children regressing. They fear for their safety and, in cases, their lives, yet they cannot access CAMHS. I am told of a 15-month waiting list. People have been told that the only way to access services is to go to the emergency department in the local hospital. The Minister of State and I know that is plain wrong. I urge her to give her very best consideration to the extra resources and staff needed to provide a decent CAMHS service, and I think she will.

7:20 pm

Photo of Josepha MadiganJosepha Madigan (Dublin Rathdown, Fine Gael)
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Táim buíoch as an deis labhairt anocht faoin dul chun cinn atá déanta againn le déanaí. This week marks the final days of national autism awareness month. It is appropriate that we take stock of the progress that has been made and the work that still has to be done. Having listened to the sincere views of Members this evening, I believe we are all committed to ensuring the rights of all children are fully vindicated. We know that education is a right for our children. The right of autistic children to access education is no different. Education is about empowerment and ensuring that a child can reach her or his full potential. It is the greatest tool of social mobility that we have and, as Nelson Mandela said, education is the most powerful weapon you can use to change the world.

Since my appointment as Minister of State with responsibility for special education and inclusion, I have met teachers, SNAs, school staff and families who are committed to the values of education and work day in and day out so that the educational rights of children with additional needs are fully vindicated and validated. The Government is also rightly playing its part. Tonight's motion is an opportunity to remind ourselves of the work done to date and what still needs to be done. In 2004, the EPSEN Act demonstrated that the Government was committed to a new approach to special education. These foundations have been built upon over the intervening years. Today, supports for students with additional needs are offered more and more on a needs basis rather than a diagnostic one. This guarantees that support will be provided to all students with additional needs whether they are in a position to access a diagnosis or not.

Since 2011, the number of special classes in mainstream schools has increased by almost 235%, from 548 to 1,836 for this school year of 2020-21. Of these, 1,567 special classes cater for autistic students. A total of 197 new special classes have been established nationally for the current school year, of which approximately 189 are new ASD special classes comprising 12 early intervention, 113 primary and 64 post-primary ASD classes. This year we are recruiting an additional 1,000 special needs assistants, bringing the total number of SNAs to a record high of more than 18,000. We have announced three new special schools over the past two years, the first new special schools in many years, demonstrating the important role that these schools play in the education system and our commitment to them.

I also secured a dedicated school reopening package for special education consisting of enhanced cleaning and PPE for schools catering for students with additional needs and the recruitment of 17 additional NEPS psychologists. Significantly, I secured a budget of more than €2 billion for the area of special education, which represents more than one fifth of the total annual budget of the Department. I want to build on this progress because I know there is still so much work that needs to be done. We are recruiting an additional 400 teachers dedicated to students with additional needs across mainstream schools and special schools to ensure that inclusion is at the heart of our education system. We are progressing the school inclusion model, with the aim of providing important therapy supports in school settings for the first time ever. This promises to be a transformational moment in mainstream special education and as part of the roll-out, I have secured funding for 80 additional therapists to be recruited by the NCSE. We are working to create 1,200 additional special class places for this September for those students who need them. The resources have been secured for this and the intensive engagement with schools across the country is well under way. I have also ensured that, from this year, arrangements are in place for facilities for special classes to be included in all new school builds. The NCSE is also developing a five-year forecasting tool that incorporates population demographics information from the Department's forward planning section. These forecasts are shared with the planning and building unit to include planning for special class accommodation in all major projects.

NEPS, along with the inspectorate, the NCSE, the Middletown Centre for Autism and the Department have developed best practice guidelines for schools on supporting students with autism. These guidelines are currently being finalised and an implementation plan will be developed to support schools with their implementation in the coming years. This will be a resource for schools to support the needs of students with autism and will assist school staff to understand the varied needs and nature of those needs as well as to identify whole-school and individualised approaches to intervention. This progress is important to acknowledge.

It is also important to take stock of where we are, 17 years after the passage of the EPSEN Act in 2004, given the increased investment and development of policy since then. We know that several sections of the Act still remain to be commenced by the Minister for Education and, as a result, I state my commitment to a full review of the provisions of the EPSEN Act to see where updates are needed and how its provisions can be best enacted to meet the needs of young people with additional needs. I can also confirm that the Government is committed to consulting stakeholders on how best to progress aspects of the EPSEN Act on a non-statutory basis. This work will help us guarantee that special education provision fully meets the needs of young people in Ireland.

Ensuring that the voice of the child is at the heart of policymaking in this area is something else to which I am fully committed. I recently met with Emma, a young woman from my constituency, who spoke about her own personal experiences of education as an autistic person and the importance of hearing autistic voices at the decision-making table and learning from their experiences. She spoke very eloquently, as did others, and she is correct that empowerment is at the heart of education and gone are the paternalistic days when rights and protections were handed down from on high as though they were gifts or favours. In the 21st century, it is vital that the voice of a young person is heard as part of policymaking. I will work with officials to explore new ways of ensuring that this is the case. As part of this, I am pleased to announce that a new departmental consultation group is being formed with advocacy organisations in the area of special education. This new forum is vital in giving a voice to young people with additional needs as an important partner in education.

It is important to recognise that the past year has been an incredibly difficult period for young people with additional needs. Covid-19-imposed school closures have had the greatest impact on young people who need in-person education. Many of these young people were not able to fully participate in remote learning. I have heard countless stories from young people and their families about how this impacted their lives with the fear of regression and loss of key skills a constant feature of this period.

The Government, at my urging, confirmed that special education was a priority as part of school reopening. We have said all along that special education is an essential service and that students with additional needs do best in school in-person. Although it took longer than we would otherwise have wished, special schools and special classes reopened in advance of the wider education system. Supplementary provision was put in place to provide one-to-one in-person education for students with additional needs in mainstream education.

Special education still remains a priority for this Government. As part of this prioritisation, I am committed to the provision of an expanded summer programme of special education this summer. This programme will build on the expanded programme that was in place last year and ensure that as many students as possible with additional needs will be able to benefit from in-person education over the summer in order to prevent regression, build key skills and confidence and make up for the missed time earlier in the year. We are also working with school bodies and staff representatives so that take-up of this year's summer programme is as large as possible for the benefit of all. Work on this is at an advanced stage. I hope to announce further details on this matter soon.

This Government's commitment to special education is clear from the resources that have been allocated and the progress that has been made. As ever, our focus is and must always be the young people themselves. Over recent weeks and months we have heard the voices of these young people and their families speak about their experiences. We must now make sure that, post Covid-19, Ireland is a place where the needs and rights of young people with additional needs are to the fore more than ever. This will be my mantra.

7:30 pm

Photo of Seán Ó FearghaílSeán Ó Fearghaíl (Ceann Comhairle; Kildare South, Ceann Comhairle)
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Gabhaim buíochas leis an Aire Stáit. Tá an Teachta Howlin agus ag roinnt a chuid ama leis an Teachta Nash.

Photo of Brendan HowlinBrendan Howlin (Wexford, Labour)
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Gabhaim buíochas leis an gCeann Comhairle. Tá súil agam go mbeidh misneach ag an Rialtas agus ag an Aire Stáit le gníomh atá romhainn uilig.

The issue of autism demands the attention of this House. That has been made abundantly clear by the contribution of every Member who has spoken. I am very grateful to all who have spoken in support of the Labour Party motion. I should mention that there are three members of the Government present, for which I am grateful. That underscores the regard the Government has for the importance of the issue of autism as one of the issues of our time that demands urgent and real attention. It demands from each of us a real effort to understand this issue. I include myself in this space when I say all of us are grappling to fully understand the issues, and then to provide supports people with autism and their families require.

Members have referenced their interactions with people. I have received many representations. I have a four-page typed letter from a friend of mine. I will read a couple of paragraphs of it into the record of the House. This person writes:

My daughter was diagnosed recently and has failing mental health, especially since she reached 16. She is learning to cope but is making progress, not necessarily linear but progress all the same. She lives at home with us and her routine and her life holds something for her. We have been able to cope. However when it comes to my other daughter it is safe to say we could in the last two and a half years write a book.

This is a family with two children with autism. The person went on to write:

Between February and November 2016 she had two significant periods of hospitalisation. However we were never given a full diagnosis of her condition. She was reluctant to leave her room, spending most of her time sitting under her school desk to the point of sleeping there most nights. Excessive amounts of time spent on schoolwork for the junior cert, perfectionism, singular black-and-white thinking, isolating herself from her family and finally self harming.

It truly is heartbreaking. There are so many stories like it. Access to residential units, the parent went on to say, is problematic for those who live in regions like the south east or north of a line from Dublin to Galway. That is just not right. Those incredible difficulties have been compounded by Covid-19.

I think there is resolve in the House from everybody I have listened to that we must do better. We must start not only with the Department of Education, from which we have heard, but also the Department of Health. Our motion states that the long-standing adversarial approach and mindset of resistance must change. That mindset of resistance must be replaced by a mindset of assistance.

The practice in the Department of Health of surreptitiously compiling dossiers of sensitive personal information from medical and other healthcare and educational sources on children with autism must be condemned. It is unacceptable, but it also gives us a window into the improper relationship between the nation's Department of Health and the nation's most vulnerable citizens. Our motion calls for a fully independent review, commissioned by a body other than the Department of Health, into this particular practice. I do not think anything else will be acceptable and I hope that will be agreed.

The motion is very comprehensive. At its heart, it calls for a national autism empowerment strategy. We in this House talked about a timeline for an autism committee in order to do that. Let us use this debate, and the support of all Members and the strong buy in from the Government and Ministers present, to finally address this issue with the resources and understanding it requires.

Photo of Gerald NashGerald Nash (Louth, Labour)
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We have had a very constructive discussion. It has been a very unifying process. Every testimony we have heard from my colleagues in the Labour Party and others represents a life and a family that the State has sadly failed. It is an indictment of all of us, quite frankly.

There has been a failure to make early interventions that can transform lives, assess, invest, support families and carers, prioritise and provide the humanity and basic simple compassion we ought to expect from a State and society that trades on a well-honed reputation for justice and humanitarianism. This is not how things should be in a rich and diverse republic. We are a republic in name only if, time and again, we fail to meet the threshold of decency and egalitarianism for all of our citizens. Nowhere have we failed more than in our approach to the rights of citizens who have autism. There has been a growing awareness and understanding of autism in recent years, but this has sadly not been met with a corresponding change to meet the escalation of unmet needs. The history of the State's treatment of autistic people is a catalogue of failure and disregard.

I recall in the early 2000s the hope that was generated by the prospect of the then Government trialing what would be a rights-based approach to a new disability Act. At that stage, in a previous life I worked alongside key advocacy groups and the National Disability Authority on a campaign to pass new legislation that would transform our approach to disabilities and the rights of disabled people. That Government, unfortunately, resiled from its initial promise to put human rights and the right to basic services at the very heart of our laws. The Disability Act 2005 turned out to be another false dawn in a long list of false dawns for some of our most vulnerable citizens.

Due to harsh experience, the expectations of citizens and campaigners are low. One of the most sobering things to have emerged from the revelations around the keeping of dossiers in the Department of Health is that none of us are surprised. Those who were the least surprised were our autistic citizens and their families and advocates. When one wakes up every morning and every day involves a battle with the State and its agencies to get the assessments, interventions and supports one needs to get a decent shot at the kind of life I have the privilege of being able to take for granted, nothing the State might do would come as a shock. This is an indictment of all of us as legislators.

I regret to say that all too many autistic and disabled citizens have been met with hostility and crucifying bureaucracy if they have the audacity to insist on the services that they should be entitled to as of right.

I note the Minister of State's plans, the plans of the Minister of State, Deputy Madigan, and the presence here this evening of the Minister for Children, Equality, Disability, Integration and Youth, Deputy O'Gorman. That is a powerful statement of support in terms of what all of us are trying to achieve in the best interests of those we all represent. We have heard the defence of the Government's record. We have heard much of this previously. I do not doubt the Minister of State's compassion and the compassion of other Ministers but compassion alone will not change things and neither will a mere tinkering around the edges. Additional investment and resources are required, and they are welcome, but what will make a real, long-term difference is a paradigm shift and a complete change of culture that puts the autistic person at the very heart of the planning and decision-making processes that will determine how they live their lives. We must empower, which is an important word, move beyond words and translate that into actions.

One important way in which we could achieve a potentially transformational change of direction is by taking our inspiration from Malta, as referenced by Deputy Ó Ríordáin earlier. Its 2016 Persons within the Autism Spectrum (Empowerment) Act is pioneering. It provides, for among other things, the establishment of an autism advisory council to advise and guide government on autism strategy.

Our Climate Change Advisory Council holds the Government's feet to the fire on climate. We should enable the experts in this area, namely, autistic people, their families and advocates, to design strategy and hold all of us to account in respect of autism. I plead with the Minister of State in the work she is doing to have the confidence in her own work to enable that to happen and to move along with them in step.

The Minister of State is not opposing the motion but there is a difference between opposing a motion and supporting it. We want action to be taken to deliver on the central tenets of this motion in the interests of all of those we represent. The Government, in this term, has a history of supporting Labour Party motions. We did the job for it on remote working. We did the job for it on sick pay. We are now doing the job for it on this particular issue, which has been a real problem in our society for far too long. We are asking the Minister of State to not just not oppose the motion but to back it. I trust she will do that and use her good offices to move forward on it, resource this area and work to empower individuals with autism in our society to be full, active citizens and contribute as best they can to our society and the Republic.

Question put and agreed to.