Tuesday, 2 April 2019
Autism Support Services: Motion [Private Members]
That Dáil Éireann:acknowledges that:— autism is a 'spectrum' condition that affects the typical development of the brain in areas such as social interaction, communication and sensory processing;agrees that:
— the first signs of autism usually appear as developmental delays before the age of three, and the symptoms and characteristics can present themselves in a wide variety of combinations which can range from mild to severe, yet it displays no outward physical signs;
— while many people, females as well as males, are diagnosed at a young age, others may not have their autism recognised until a later age;
— many older autistic adults have never received a diagnosis or any support or assistance from the State;
— the cause of autism is unknown, but, it is generally accepted that autism is caused by differences in brain development;
— in most cases a parent will notice a difference in their child’s language, behaviour or social development, and the family General Practitioner or Public Health Nurse can then refer the child to a paediatrician who can assess the child’s developmental delay and ultimately a diagnosis can be applied;
— many of the barriers autistic people face come from how society responds to those with the condition, and unemployment, social exclusion and many mental health challenges arise, not from autism, but from a lack of understanding, support and accessibility; and
— autistic people, with the right support, can participate meaningfully and make a valuable contribution to society due to a different way of seeing and understanding the world;— one in every 65 school pupils or 1.5 per cent of the schools population has a diagnosis of autism, meaning approximately 14,000 students with autism are in the school system, and this number is significantly higher than the previously estimated number of one in every 100 students;calls for:
— Ireland still awaits an Autism Bill and an Autism Strategy despite an initial Autism Bill being introduced to Dáil Éireann in 2012, and lapsing in 2014 along with a subsequent Autism Bill from Seanad Éireann awaiting its second stage in the Dáil since July 2017;
— autism is recognised to be a heterogeneous group of conditions and consequently there are large variations in individual profiles, and service delivery needs to take account of both the heterogeneity within the spectrum and of the lifelong nature of the condition, and recognise that needs change with age;
— early diagnosis and appropriate supports are key and ensure that people are enabled to develop strategies that make life easier rather than more difficult for themselves and for those with whom they live, and that early intervention aims to develop skills in the core areas of communication, social interaction and imagination that underpin adaptive functioning in order to provide the person with the highest possible quality of life;
— Autism Spectrum Conditions services should ensure individuals will receive their health services as close to their home as possible;
— services should be delivered using a multi-disciplinary model, including:— Primary Care Teams;— the current range of services are not available consistently across areas and are not accessible to everyone on the spectrum;
— specialist Disability or Child and Adolescent Mental Health Services; and
— subspecialist autism specific services at health and social care network level;
— greater multi-agency co-ordination is required to provide clear pathways for individuals and their families;
— autism supports and care are required throughout the whole of one’s life-cycle and should be provided on the basis of individual needs;
— autistic people do not just need clinical supports but also employment opportunities, access to quality advice when making critical life decisions, social opportunities and autism-friendly public services; and
— more must be done to create an accepting society which celebrates autistic people for who they are; and— an all-party Oireachtas Committee on Autism to be set up in the immediate-term;
— this Committee to be tasked with developing and publishing a comprehensive Autism Empowerment Strategy (AES) within a six-month-period of its establishment;
— the Committee to be mandated to hear directly from autistic people and their families;
— the Minister for Health, Simon Harris T.D., to publish the findings of the review of operational effectiveness of existing health services’ responses in addressing the particular needs of those with Autism Spectrum Disorder, which was to be published in September 2017, in advance of the all-party Oireachtas Committee being set up;
— legislation to be drafted and introduced to compliment and underpin the publishing of an AES and to give this strategy a statutory footing;
— the establishment of a multi-disciplinary task force, including autistic individuals and/or their family members, to oversee the rollout of an AES and monitor legislative oversight;
— a review of the National Council for Special Education policy with regard to provision of Autism classes at primary and post-primary level;
— a consultation with disability groups and educational stakeholders on the full implementation of the Education for Persons with Special Educational Needs Act 2004, with a view to full implementation, to be undertaken at the earliest opportunity;
— an urgent review of supports available for autistic adults throughout their life-cycle; and— an all-island approach to be attributed to the development of any strategy, noting the positive work that the Middletown Centre for Autism has contributed to autism services since its establishment in 2007, as a body funded by institutions both North and South of the Irish Border.
I am delighted to introduce the motion to the Dáil this evening for debate. It is particularly poignant and appropriate as it is World Autism Awareness Day. I warmly welcome all of our guests in the Gallery who have made such a special effort to be here. Their being here late on Tuesday night is a testament to who they are and to their strength and conviction in fighting for the rights of their children, their family members, their students and their members. We send warmest wishes to the parents here this evening as well as to all the parents watching the debate from home via the live link. I acknowledge their involvement and the part they have played in getting the motion to the Dáil floor. Their tireless work, first-hand experiences, wealth of knowledge and struggles have informed our work and everything we do. As a mother, I commend them for their stamina and courage. To our stakeholders, I thank them for their campaigning, lobbying and perseverance. Their expertise is invaluable in informing and educating all of us as public representatives.
The motion we have tabled sets out a clear framework towards finally delivering an autism empowerment strategy for Ireland. We call for the establishment of an all-party Oireachtas committee to be mandated to produce an autism empowerment strategy within six months. Critically, this would be in direct conjunction with the various advocacy groups, parents and artistic individuals. We need all-party buy-in for this to work. Should the motion pass, the next critical and urgent step is to work together to establish the committee.
As our party spokesperson for education there are a few key points I would like to make in my contribution. The equal right to education for all children is not being upheld at present by the State and the Government. We know that under the Education Act 1998 schools are under statutory obligation to provide education to students appropriate to their abilities and needs. The failure to make diagnoses in adequate time for school applications and the lack of autism spectrum disorder, ASD, classes and available places for autistic children is a denial of a child's right to education. These factors create a two-tier system in our education system.
I am positive that all Deputies will have encountered parents concerned about the wait for diagnosis for their child, or that their child has yet to receive a place in primary or secondary school or, indeed, that their child has been asked to leave a school as a result of the child's needs not having been met. We need a review of the method by which the Department of Education and Skills and the National Council for Special Education, NCSE, process the establishment of autism spectrum disorder classes in schools and how these classes are staffed. We need to get to the bottom of why so many autistic children are not in school. We need to find solutions to the barriers facing autistic children gaining places in schools and address the fundamental issues as to why schools are reluctant to open autism spectrum disorder classes. Until we are honest and open about all of these influencing factors and take action these problems will simply compound year on year.
Our schools must be resourced adequately to provide equally for all children who attend, with or without additional needs. All schools need to acknowledge that diagnostic rates are increasing among our population and we must deliver for that changing demographic. Teachers must be supported through this process. Schools cannot simply state they will not open an autism spectrum disorder class without justification when there is clear evidence of need. If a parent feels his or her child needs additional supports, and that child has been diagnosed to verify this, that parent must be heard.
We also need to address the issue of social stigma. We must be cognisant that the potential to institutionalise, intentionally or not, remains a reality and this must be acknowledged in our schools. A child with additional needs is as entitled to an education and equal opportunities as any other child, to become a fully participating citizen with access to education and employment should he or she wish. Families and parents must be supported in their efforts to achieve this. Of course, there are many varying points on the autism spectrum and a situation that may be accepted by one child without problems might be found completely overwhelming or challenging by another. This is why individual education plans are crucial to a child's development and progress in a school.
In the motion we call for consultation with disability groups and educational stakeholders on the full implementation of the EPSEN Act 2004, which would be undertaken at the earliest opportunity. Second level students with additional needs throughout the State are being denied access to particular subjects on a teacher's evaluation of his or her readiness for that subject. Parents have told me this happens regularly and they are denied input. School boards of management need to step up to the plate and request the relevant supports from the Department of Education and Skills, and the NCSE where needed, so teachers feel supported in this situation. It is pointless to advocate policies on inclusiveness unless these policies are implemented and monitored in a standardised and consistent way.
We have come a long way from the dark days of the immediate institutionalisation of anyone deemed different, or any woman or child who did not fit in the accepted social norms. If we are to learn anything from that dark part of our past it should be that all of our citizens should be cherished equally. This right must begin at birth and carry throughout every child's journey in our education system. If our shared hope is that we grow as a compassionate and tolerant society we must practice what we preach and work to ensure every child has a place in a school in his or her local community. This is not an issue for parents to fight alone. It is the responsibility of all of us. If we have failed even one child then we have failed, and I urge all Deputies to vote in favour of the motion.
I commend the motion to the House. I ask that all parties and Independents support the asks contained within it, which have the capacity to transform the lives of the autistic community in Ireland. It is heartening to see the Visitors Gallery so busy, with visitors from the autism community, advocacy groups and families in attendance. They are very welcome. Céad míle fáilte.
The provision of services and supports to persons with autism is not fit for purpose. The autism community in Ireland is way ahead of where the thinking of many politicians is at in demanding their rights to inclusion and requesting acceptance of the condition. We must all recognise that autistic people have unique skills and intellect that need to be embraced and allowed develop to their full potential and not marginalised as, all too sadly, has been the case for many years.
The motion is different from others that have preceded it, in that it is the first real attempt at looking at a future for the autistic community in Ireland from a more social approach rather than being medically or clinically led, as so often has been the case. Since last June, we have reached out to the Irish Society for Autism, South East Autism Action, DCA Warriors, Autism Assistance Dogs Ireland and AsIAm. They are all represented here this evening and I thank them for their input and suggestions in putting the motion together. We also studied international strategies in Canada, Scotland and Malta when framing the approach. Last August, I organised a Sinn Féin delegation from North and South to visit the Middletown Centre for Autism in County Armagh. I acknowledge the fantastic work they have done since being established in 2007. I again record my thanks to all involved for their time and welcome.
All of these contributions and meetings have contributed to the initiative before the House but the hard work starts tomorrow. We have had motions passed previously, particularly in the area disability. Unfortunately, while the Government supported the passing of those motions, the asks contained in them remain undelivered. This cannot be the case in this instance. Two attempts I know of have been made to legislate for an autism Bill in the past. Both attempts failed and both of the Bills were criticised for being too medically focused. I understand there is support for the motion before us from the Government and Fianna Fáil. This support is very welcome but it must not, as I have said, end here. We ask for the establishment of an all-party committee to be set up and strictly mandated to develop an autism empowerment strategy within a six-month period.
Today Sinn Féin wrote to the Ceann Comhairle seeking his support for that endeavour and asking him to work to make it happen as early as possible.
I again refer to the representatives in the Visitors Gallery. They are the experts. They need to be part of this process as it develops. I hope that all of the groups they represent will be invited to present to the committee once it is established.
I cannot finish without referring to the UN Convention on the Rights of Persons with Disabilities. Sinn Féin remains utterly frustrated by the slow rate of progress of the implementation of the rights contained within it. Similarly, we believe the optional protocol should be ratified without delay. The argument that all legislation must be brought up to speed before it is ratified does not stand up. In the past two weeks, I wrote to the Minister for Justice and Equality, Deputy Flanagan, regarding the holding of Report and Final Stages of the Disability (Miscellaneous Provisions) Bill 2016 and in response I received only a bare acknowledgement.
I wish to again commend the autism community in Ireland. On World Autism Awareness Day 2019, they deserve the absolute commitment of all parties present to deliver on this motion. They have been waiting and marginalised for far too long. Let us recognise the unique skills of all persons with autism and their ability and potential to play a full and fulfilling role in our society. I commend the motion to the House.
I wish to thank my colleagues, Deputies Funchion and Ó Caoláin, for bringing forward this very important motion. It is appropriate for it to be discussed in the House on World Autism Awareness Day. It raises an issue that has come to the fore in recent years. The reality is that we are behind the curve in Europe on this issue. Many states have an autism strategy in place. Such a strategy is needed in Ireland.
A study by the NCSE estimates that one in every 65 students has a diagnosis of autism. This condition affects a very large number of children. Although I accept that there has been an increase in autism spectrum condition, ASC, places and supports, it is simply nowhere near the level required.
In recent months, I have been contacted by dozens of parents who are upset and worried that their child who has autism cannot get a place in the local school. Children are waiting very long periods to be assessed and in the meantime are not getting the supports and access to therapies that they need. There are many young and growing communities in Dublin Bay North and finding a place in a local school is tough at the best of times. However, finding a place in a local school for a child with autism is next to impossible in some areas. That is wrong and unfair. It is a failure by the State to meet the needs of its citizens that we cannot ensure that children with autism get the supports they need in their local school. The State has an obligation to ensure that every child meets his or her full potential. To do that, appropriate supports must be in place. No child should be left behind simply because he or she has additional needs. I commend the motion. I hope to see the establishment of an all-party committee which will finally deliver an autism empowerment strategy for Ireland.
In the constituency of Dublin Mid-West which I represent, a high number of children and young people with autism and other special needs are on particularly lengthy waiting lists for support services. There are some fantastic services in the area such as Rosse Court in Lucan and schools such as St. Peter the Apostle junior and senior schools in north Clondalkin that provide world-class supports for children and families. Unfortunately, too often such services are not adequately supported by the Government.
It can take up to 18 months for a child to get a diagnosis from the local CAMHS service. When the child gets a diagnosis, he or she may have to wait a significant period before being able to access services. The most recent updated figures provided to me by the Minister for my local HSE community healthcare organisation area indicate that more than 50 children were waiting for a place on the early bird programme, 173 for psychological support, 203 for speech and language therapy and 231 for occupational therapy. However, the real scandal is the length of time for which they must wait. Children were waiting 18 months or more for the early bird programme and psychological support, 23 months for speech and language therapy and 24 months or more for occupational therapy. That is three or four years of a young child's life during which his or her development is actively being held back by the failure of the Government to invest in adequate services. Indeed, when I asked a mother from my constituency who has two young boys on the autism spectrum what was the single worst thing about her experience of the system, she did not refer to the length of time she had to wait for a diagnosis. Rather, she stated it was when, on the day she got the diagnosis for her first child, she was given a 50-page information booklet and sent on her way. She said it was the most difficult moment of her life and that the one thing she would seek today, in addition to increasing resources for support services, would be that parents be given greater support at the time of diagnosis to enable them to navigate their way through that very difficult, traumatic and, at times, bureaucratic system.
I echo the comments of other Members on schools and school placements, particularly senior school placements in Dublin, and on social welfare anomalies such as the taxing of carer's allowance - unlike domiciliary allowance - which places an unnecessary burden on parents.
I very much hope that the Minister of State, Deputy Finian McGrath, who is present, is listening to what Members say on this issue. More importantly, I hope the Government will act and do things differently such that families such as those we represent do not have to continue to live with the very difficult circumstances that have arisen from the failure of the Government to plan, invest and support families and people with autism.
Ba mhaith liom fáilte a thabhairt do gach éinne sa Visitors Gallery. Bringing up a child with autism can be challenging for parents, particularly when other people do not understand the issues involved. Parents often find it more difficult to get their child access to educational and other services because of perceived issues related to the child’s condition. Unfortunately, this can lead to further social isolation and frustration for the child and heartbreak for the parents.
On many occasions, Sinn Féin has, through its spokespersons on education, disability and health, raised the issue of the serious lack of special school places and autism spectrum condition units throughout the country. I can attest that that lack of services is very evident in Dublin North-West. It is particularly acute at primary and secondary school level. My constituency office is currently dealing with several such cases.
The parents of a child with autism whose case I am currently dealing with are in the Visitors Gallery. Such parents are a credit and an example to us all. The problems they face in accessing proper services for their son, Seán, seem insurmountable. Seán has a dual diagnosis of Down's syndrome and autism spectrum condition. His parents continue to fight for him because, as his mother stated, he is being deprived of an appropriate school placement that can provide him with the necessary supports that will result in him performing to the best of his ability. She states that there is a severe lack of appropriate places for children like her son in the north Dublin area. He currently attends a mainstream school but has had a difficult time because the school was not following recommended strategies or was not able to provide him with the supports he requires. This has proven very stressful and frustrating for Seán and his family, and Seán has become increasingly introverted. His parents are finding it very difficult to secure an appropriate school placement for him within their catchment area, while he is placed bottom of the list for places outside their catchment area. As a result of the lack of resources and services for those with autism, Seán is effectively being deprived of an appropriate school placement and a placement in an ASC unit. Such appropriate placement in or school or an ASC unit would provide Seán with the necessary supports to allow to perform to the best of his ability. It is what a parent would want for his or her child. The problems faced by Seán and his family are not unique.
Go raibh maith agat, a Leas-Cheann Comhairle. Chun críoch a chur leis an méid a bhí le rá go dtí seo, I want to say that it is not good enough to support this motion. It requires action.
One of the actions in the motion is to set up a committee of the Houses to ensure delivery, which has not happened thus far. We are talking about Irish citizens. Irish citizens are supposed to enjoy their rights to the full. We have to enable every citizen to enjoy the benefits of citizenship. This is not happening for those who have autism, be they in school, the workplace or community. We have much further to go. I urge Members not only to support the motion fully but also to act on it.
I thank all Deputies, particularly Deputies Funchion and Ó Caoláin. I agree with many of their points and acknowledge the work they have done on disability over the years. I thank the Deputies for tabling this motion during world autism month and on this day, the 12th World Autism Awareness Day. I welcome the opportunity to restate this Government's commitment to supporting people with autism and their families. Like my colleagues, I welcome all the advocates, parents and families in the Visitors Gallery. The more who attend, the more the motion is strengthened and the greater the political will to develop autism services.
Autism spectrum disorders are a group of life-long neurodevelopmental conditions that are estimated to affect between 1% and 1.5% of the population. Autism is a complex condition and sometimes results in physical, sensory and social difficulties that can cause distress for individuals and their families. When properly supported and understood, however, individuals with autism can thrive, flourish and maximise their full potential.
The overarching principle governing the planning and delivery of services and supports for adults and children with disabilities, including autism, is that they should be integrated as much as possible with services and supports for the rest of the population. The Government's agenda in this regard is set out in the current national disability inclusion strategy, which I launched in July 2017. The strategy takes a whole-of-Government approach to improving the lives of people with disabilities and aims to create the best possible opportunities for people with disabilities to fulfil their potential. It reaffirms established Government policy that public services should include and serve people with disabilities. This is underpinned by the Disability Act 2005. A wide range of Departments are included in the strategy and its remit encompasses both mainstream and dedicated disability services. The strategy, which sets out Government policy on disability until 2021, takes a non-condition-specific approach to the delivery of public services and emphasises the importance of cross-departmental working and stakeholder consultation. The strategy included the development of a specific programme of additional actions in regard to autism, designed in conjunction with the National Disability Authority, NDA. In line with the Government's mainstreaming agenda, the Department of Justice and Equality has responsibility for providing a focal point for the promotion and co-ordination of disability policy, including autism.
The programme of actions on autism recognises that a greater understanding of autism across the public sector is required to address the needs of those with autism on the same basis as others with disabilities. This increased awareness has informed the Government's approach to policy development and service reviews, ensuring that detailed consultation with service users and representative bodies is the norm.
This approach, with a keen emphasis on consultation, was adopted in 2015, when the NCSE brought forward policy advice that specifically examined issues relating to the education of children with autism. The council consulted a wide range of stakeholders, including parents and children with autism. The council reported that consultation groups acknowledged that generally the education supports in place are the correct supports and work well for students with autism. Its policy advice sets out a range of recommendations which are currently being developed within the Department of Education and Skills. Alongside this consultative approach, there has been a significant increase in cross-departmental and interagency working. This has resulted in improved services for people with autism. Deputies may be familiar with the quotation, "Autism doesn't come with a manual; it comes with a parent who never gives up." I recognise that, all too often, the efforts of parents have had to be directed towards the providers of services that have not been meeting the needs of their children. This has begun to change but further work is needed. I totally accept that fact.
I am pleased the Department of Education and Skills has moved towards providing educational supports to children based on the needs of the pupils rather than on a particular diagnosis of disability. This recognises that there is a spectrum of ability and disability within every category of special educational need, whereas an allocation model strictly based upon diagnosis does not capture these distinctions. To date, this approach is working well and is consistent with international approaches.
The Government is investing heavily in supporting our children with special educational needs, with €1.8 billion being spent annually, which is about €1 in every €5 of the education budget. This includes an allocation of over €300 million towards providing additional resources specifically to support students with autism in schools. The greater proportion of children with autism attend mainstream class, where they may access additional supports if required. Special class placements are provided in mainstream schools for students with autism and more complex needs where it has been demonstrated they are unable to learn effectively in a mainstream class for most or all of the school day, even with appropriate supports.
Since 2011, the number of special classes has increased from 548 in 2011 to 1,459 across the country now, of which almost 1,200 are ASD special classes. Special school placements are provided for other students with autism where their needs are more complex. I note the Deputies' concerns regarding wider commencement of the Education for Persons with Special Educational Needs Act 2004. While a number of sections of the Act have been commenced, including those establishing the NCSE and those providing for an inclusive approach to the education of children with special educational needs, there are a number of sections which have not, which I accept.
Under A Programme for a Partnership Government, the Government has committed to consulting stakeholders on how best to progress aspects of the Act that were introduced on a non-statutory basis. Consultations have taken place on a range of policy reforms, including the new model for allocating special education teachers. Significant progress has also been made in orienting our health and social care services in a direction that is more appropriate for users with autism. Deputies will be aware that my colleague, the Minister for Health, has requested that the HSE carry out a review of health services for people with autism and identify examples of good practise that can be replicated more widely in the health service. Again, there was strong emphasis on consultation with stakeholders and service users. Following the publication of this review, the Minister for Health requested that the HSE establish a programme board to implement the recommendations of the review and publish an autism plan this year. This commitment is reflected in the HSE national service plan for 2019. An initial meeting of the programme board has now taken place and work is under way to ensure people with lived experience of autism are represented on it. That is a major step in the right direction.
Several actions by the HSE are planned or under way. These include the development of guidance for clinical practitioners working in the field of autism, standardising the autism assessment process and the planning of a communications public awareness campaign. Standardising the assessment process, in particular, will be an important step in improving access to services for people with autism.
Under the programme for progressing disability services for children and young people, children's disability network teams are being reconfigured so that all children with a disability, including autism, and their families will have access to services according to their needs. The HSE's national service plan recognises the need for further investment in additional therapies and assessment for children and funding for a further 100 new therapy posts is being provided over the course of 2019.
The HSE is committed to rolling out a national access policy that will provide for a clear pathway in terms of access to primary and specialist network teams for children, young people and adults with autism.
The HSE is committed to rolling out a national access policy, which will provide for a clear pathway of access to primary and specialist network teams for children, young people and adults with autism. Additionally, the HSE and Tusla have been rolling out a joint arrangements protocol for the co-ordination of services for children and young people with disabilities. Many children and adults with autism spectrum disorders who have support needs can be effectively supported within mainstream child and adult health services. Most children with developmental delay will access therapy services via primary care. The Government is committed to the expansion of primary care. This is reflected in the roll-out of primary care centres across the country. There are 127 operational centres, with further centres scheduled to open this year. In addition, another 80 sites are at various stages of development. Our intention is to drive forward the Government’s reform agenda, as set out in the national disability inclusion strategy. The Government will not oppose this motion.
I thank Sinn Féin for introducing this motion. I do not often agree with Sinn Féin Deputies, but I am fully behind them on this occasion. I welcome the people in the Gallery. I would like to extend a special welcome to Patricia O'Leary, who has travelled all the way from Ballinascarty to be here this evening. I would like to publicly acknowledge the Trojan work she does in the field of autism. I would also like to acknowledge the presence of the Dublin 12 campaign group which works very closely with my colleague, Senator Ardagh. Fianna Fáil is happy to support this motion on World Autism Awareness Day. More importantly, we support the values that underpin the motion. The complexities of an autism diagnosis should not preclude any person from the right to a fulfilling life. In that regard, the introduction of an autism empowerment strategy can provide for achievable, effective and sustainable intervention programmes. The motion before the House proposes the establishment of an all-party committee on autism, which would "hear directly from autistic people and their families" to gain practical and actionable insights into their thoughts and aspirations. This is very welcome.
Last year, I had the pleasure of opening the Re-Thinking Autism conference in Cork. The attendees were a diverse group of adults with autism, parents, families, caregivers, employers, educators, professionals and advocates. I believe this mix is important because far too often, policymakers tend to discuss autism with just some of the stakeholders. We often neglect to include everyone. That said, it is necessary to point out that progress cannot be made with a strategy unless the HSE service plans that have been promised are put in place. We all know that early intervention is vital. In that regard, it is imperative that the full capacity of children's disability network teams is put in place without delay. Fewer than half of the 129 teams are in place at this stage. I have raised this issue on a number of occasions. I was told the new teams would be in place by the end of 2018. Clearly, this has not come to pass. Not enough children's disability network teams are in place. Moreover, the amount of time that a child must wait to receive a first assessment for occupational therapy is truly shocking. Over 6,500 people under the age of 18 have been waiting more than a year for such an assessment. The number of occupational therapists employed in the HSE disability services remains below the level required to ensure services are not understaffed. Aside from anything else, the right to an assessment is set out in law. The Disability Act 2005 provides that an assessment must commence within three months of an application and must be completed within a further three months.
The Bill mentioned in the motion, which Fianna Fáil supported during its passage through the Seanad, will not make a difference unless the Government lives up to its responsibilities. Thankfully, there is a growing realisation in Irish society that we need to find ways of accommodating people with autism, particularly children. It is great to see shops, cinemas and football stadiums offering places where people with autism can rightly take part in everyday activities. I am particularly proud of Clonakilty, which is in my constituency of Cork South-West, because it has been designated as Ireland's first autism-friendly town. Corcaigh Thiar Theas is leading the way again. In order to attain this honour, which was awarded to Clonakilty by the AsIAm organisation, the town had to comply with a rigorous process. Participants in this initiative include businesses, volunteers, schools, public services and healthcare professionals. Organisations that are signed up to this initiative are known as autism-friendly champions and are recognisable by a sticker displayed on the front door of their premises. Each of them also displays a "service dog friendly" sticker. This shining example of how to make our communities more inclusive can be replicated throughout the country. In that regard, funding needs to be in place so that supports can be readily available. I hope the Government will take some meaningful and concrete steps to make progress with the concepts outlined in this motion. I call on the Minister of State to accept the motion. I am glad he has indicated he will do so.
I am grateful to Deputy Murphy O'Mahony for giving me a minute and to Deputy Donnelly for allowing me in. I have a nephew-in-law and a grand-niece who suffer from or are affected by from autism. As a family, we live with it. When we debate motions of this nature, it is very important that we give time to the people who live with it. That is why I am most grateful to the Deputies I have mentioned.
I will keep this brief because if I go on too long, some of my colleagues will not get in. Callum and Emma are two beautiful people who are part of our family. I salute all the parents and other family members who are in the Gallery tonight. The parents of Callum and Emma are fantastic, particularly their mothers. They deal with this issue 24-7 - morning, noon and night. Until and unless one lives with it and sees it happening in one's own family, one does not really realise it. No matter what one reads in motions or elsewhere, one has to see it happening in front of one's own two eyes.
I would like to make four brief points. First, in some parts of this country, services for adults with autism are almost non-existent. Second, in many parts of the country, very limited summer provision is offered to primary or secondary school students when they come out of school for the summer. Third, we should encourage school boards to have among their members the parents of autistic children. Fourth, there is a serious lack of support for autistic people when they leave school.
There are many things we must change. I fully commend this motion. Like many people, I got a message on Facebook yesterday morning from a mother who runs the My Boy Blue page. It is shocking and disgraceful that she has had to go to court to fight for her son's educational rights. It should not be happening. We should think of her family and all the other families that have been placed in this position. I commend the motion and I support it. I am glad that Deputies on this side of the House will support it. There should be no vote on this motion. It should be unanimously agreed by everybody.
As Deputy Murphy O'Mahony has said, Fianna Fáil will support this excellent motion. I hope it is supported unanimously by the House and certainly by the Government. I acknowledge that Deputies Funchion and Ó Caoláin, who tabled the motion, have taken a lead on this issue.
The Minister of State may be aware that a few weeks ago, Senator Reilly told the Seanad that "A year in the life of any child is critical, but a year in the life of a child with autism is even more so because it is difficult to catch up on the missed opportunities." I believe he said this because he is very angry with the Minister, Deputy Harris, and the Government as a whole. Senator Reilly explained that legislation relating to a national autism strategy, which was passed by the Seanad, "now lies dormant". I remind the House that in the words of Senator Reilly, "the early interventions that [children] should be having, which they are not having, will impact on them much later in life". Tonight we have an opportunity to begin to right that wrong by making sure this country has sufficient numbers of doctors, psychologists, social workers, occupational therapists and the many other professional support people who are needed. Tonight we have a chance to make sure there are enough special needs assistants and that places in ASD units do not suddenly disappear when a child goes from primary school to secondary school. Tonight we can say we support teachers in their work with pupils with autism.
Earlier this evening, I had the great privilege of meeting a young man called Aidan and his autism assistance dog called Gandi. This has been a life-changing intervention for Aidan and his mum.
Autism Assistance Dogs Ireland deserves great credit. There is much we can do, but, for some reason, the Government is not. Many good organisations are working to help people and their families living with autism.
In my constituency we are lucky to have a lifelong autism campaigner, Bernie Nelson, whom the Minister of State has met on his travels to counties Cavan and Monaghan. She has a wonderful son, Liam, who has autism. He has been an inspiration for her and many other parents who, together, have established and developed the Cavan Autism Parents Support Group, CAPS. Since Bernie founded CAPS, she has noticed a remarkable increase in the number of families attending the support group. It has gone from 20 to 67 families and includes 77 amazing children. The group is organised by parents, carers and volunteers who, together, run activities such as sibling workshops, Easter and summer camps, Saturday clubs, day trips and many more activities for families.
Parents are frustrated. To be fair, they are not asking for much when one sees how much they achieve for themselves. As they know only too well, every day is a struggle. Bernie Nelson described how the State had supported her in her quest to provide services:
If I had the Minister in front of me, what would I say? I would tell them to come with me, for a day. I would walk them side by side through all the work we do, so they could see the good it has for both the children and their families. I would want the Minister to see what it takes each day to work with these children, getting them onto the bus, and then I would want them to come back to me and try say “we don’t deserve better funding”.
I am fed up. I am at my wits’ end. There are days I could just lie down and cry, thinking about my own son, thinking about all the children here [attending CAPS].
Bernie Nelson’s experience is reflective of those of so many other parents across counties Cavan and Monaghan. We need a strategy and an approach. For that reason, I am happy to support the motion and commend Deputies Ó Caoláin and Funchion on bringing it forward for debate on World Autism Awareness Day.
On World Autism Awareness Day, I am delighted to support the motion. I acknowledge those in the Visitors Gallery, as well as Deputies Funchion and Ó Caoláin for bringing forward the motion which I hope will receive unanimous support because there needs to be one voice on this issue. Children with autism need to have the same chance as every other child.
The Cork-Kerry region accounted for 40% of the country’s overall waiting list disability assessment waiting times. Within that figure, a significant cohort are waiting for ASD assessments just to start the process. While there is a three-month statutory limit, very few, if any, will realistically achieve it, with 80% of cases held back. That, in turn, wipes out any chance of an early intervention. After that, it is all about catch-up.
Services are overwhelmed, but that pales into insignificance when one looks at the overwhelming challenge with which parents are faced in having to fight the system, as well as dealing with their children's needs. The long distances young people have to travel to avail of autism services is also an issue in my area. An area as large as Ballincollig, while it has five schools, does not have an ASD unit. There is a need for one in the area.
I thank the proposers of the motion and acknowledge all of those in the Visitors Gallery.
Parents of children with autism are looking for services, not for sympathy. The situation in counties Cork and Kerry, as described, is a national scandal. In my area children are waiting between two and three years for an autism assessment. At the end of it, if they receive a diagnosis, there is still no holy grail. There simply are no services available. Once a child is put on the autism waiting list for an assessment, the HSE completely washes its hands of him or her. There is no longer any early intervention and he or she no longer receives any speech and language therapy or occupational therapy. He or she is on the waiting list of the service provider and the HSE is shot of him or her. That is the reality in counties Cork and Kerry. It is a scandal.
We have made progress in providing ASD units, but we do not have enough special schools. Home tuition is no substitute because there is no social interaction and it is a huge imposition on the entire family in question. Later in life, there are no residential places available. I have raised this as a Topical Issue matter before. It is a scandal, with a never-ending waiting list for residential places. Elderly parents are caring for adult children with profound disabilities, including autism and they do not know what will happen when they pass on because there is no likelihood of obtaining a residential place for them. We are failing them and it is not good enough. All any parent of a child with autism wants is that his or her child can be the best he or she possibly can be. We are not delivering in that regard. Acknowledging this would be a starting point.
One part of the motion which strikes me reads:
Many of the barriers autistic people face come from how society responds to those with the condition, and unemployment, social exclusion and many mental health challenges arise, not from autism, but from a lack of understanding, support and accessibility,
These words had particular meaning for me this week when I was contacted by a mother in Navan whose son was attending Ard Rí community national school, the same school my three children attend. She said to me her son was doing well but that the battle to obtain support was unreal, including repeated refusals to give him an SNA. She is concerned about his transition to secondary school.
The lady in question is also a medical doctor and expressed how she was horrified by the increased mortality and morbidity rates among autistic people. Autistic adults have been shown to have a life expectancy 16 years less than those in the non-autistic population. Not everyone is as lucky as this boy in terms of the support he has received. In the past ten days I have had two families from two schools in my constituency inform me that their children have been sent home at noon each day, three hours earlier than the rest of the school population, simply because the schools cannot cope. In what kind of society are we living? Deputy Thomas Byrne and I are working to resolve the issue, but it is simply unacceptable in this day and age. The need for full proper supports for all children in the education system is urgent to ensure every child can have a fair crack at life they deserve.
I compliment the proposer of the motion, Deputy Ó Caoláin. It is regrettable that in dealing with such an important issue the Minister of State is sitting alone on the Government benches, with not one single member of the Government to support him.
I want to address the HSE's response to a parliamentary question about second level students transitioning to adult services. Providing notification of funding for community health organisations, CHOs, and students in May is much too late. It does not give them enough time to contact their service providers to have the proper services in place before September. I recommend notifying all parties involved 12 months in advance to ensure they will be able to provide the proper care services to ensure a smooth transition to adult services. The timelines, as well as the numbers receiving timely adult care, must be improved on. In addition, I want to bring to the Minister of State's attention three specific cases which I have asked him to examine previously. The first is that of Lisa Pollman-Daamen who is receiving part-time care in Camphill Community Dingle and seeking full-time care. Lisa's parents met the Minister of State a few weeks ago and had a positive meeting with him. Despite this, the HSE is still claiming it does not have funds available to provide full-time care. Will the Minister of State look at this case again?
The second case is that of Liam Moloney, the son of Tom and Siobhán Moloney. Liam is also in part-time care, for three to four days a week, but is in need of full-time care. Both parents also met the Minister of State last year. Unfortunately, following a constructive meeting, however, their situation has not changed.
The last family is that of James McCarthy, son of Jim and Sheila who have also met the Minister of State following my intervention last year. James is not receiving any care. Despite commitments from the HSE, nothing has happened.
Will the Minister of State look at these three specific cases as all of the families have met him? They desire action to give them the supports they deserve and need.
I commend the sponsors of this Bill. On World Autism Awareness Day, I think in particular of the 3,600 families who, at the end of 2018, were waiting for a period in excess of the statutory limit for an assessment of needs. As we know, without such an assessment, children with autism cannot access basic services such as speech and language therapy or obtain extra support in schools such as special needs assistants. Approximately 600 children are born with autism annually. Behind statistics are real-life stories of families who find it very difficult to cope and who are incredibly frustrated. Evelyn, mum to four and a half year old Charlie, told me of her sense of disbelief, anger, frustration and complete and utter desperation. She spoke of inefficiencies in the HSE and roadblocks in the education sector and in the disability sector. These parents want nothing but the best and the most potential for their children.
Many inconsistences exist in access to autism services in the State. We all acknowledge that early intervention and autism-specific education gives children the potential to have the best quality of life.
Fianna Fáil supported the Autism Spectrum Disorder Bill 2017, which provides for the development and implementation of a cross-departmental approach which is crucial. I pay tribute to the advocates. Yesterday I had the opportunity to speak at and support an employment fair for people with autism.
I commend Deputy Funchion and Sinn Féin for tabling this motion. She has done sterling work in this area. It is appropriate that we discuss this issue on World Autism Awareness Day. Awareness is crucial to understanding. In the past, autistic adults were institutionalised, marginalised and, at worst, hospitalised in this country. Thankfully, society's approach towards people with autism has improved and there is more inclusion and understanding. It has been autistic people themselves and their families who have changed misconceptions about autism. Their life experience and testimony has given us a better understanding of autism.
There are still enormous barriers in society for autistic people in employment, education and support needs. Autistic people can live perfectly productive lives. Many of the barriers which autistic people face come from how society responds to them, which is quite inadequate. Early intervention is crucial to children and the current delays in diagnosis can have an enormous impact on a child's development. Many children find themselves in very long queues for crucial supports. Families are forced to seek private services or else face waiting years for early intervention. The Disability Act 2005, which provides that children be assessed within three months, is failing so badly that families are bringing the Government to the High Court for breaking its own legislation. It is extraordinary that parents must drag the Government through the courts to secure early intervention. It is incredible.
We can have very good speeches in this House and the Government can say that it is doing its best, but the figures speak for themselves, as others have noted. They are damning of this Government and its predecessors. In 2008, 1,143 applications for an assessment of needs evaluation were not completed within the statutory three-month period. By 2017, the figure had risen to 2,154, and by October 2018, 3,662 were overdue. Potentially thousands of families could bring the Government to court because it is breaking its own laws. It is an extraordinary position in which the Government has placed itself.
I will conclude on a positive note. Today, one of the most inspiring activists of our time wrote on Twitter that she was "proud to be on the spectrum". Most people will know this young Swedish school student, Greta Thunberg, who has been campaigning for climate justice. She also said that for most autistic people "it is an endless fight against schools, workplaces and bullies" but given the right supports it "can be a superpower".
Previous speakers welcomed our visitors to the Gallery, as do I. It should not be necessary that we would have visitors in the Gallery to pressurise the Government to do what is right. I thank the Sinn Féin Deputies for giving me the opportunity to speak on this motion. I come from a city and a county where services for people with autism are practically non-existent. I became aware of a review, which I will return to shortly, in December 2018 when the Galway Autism Partnership, which provides a service to 200 families, appealed to all local Deputies to do something because it was about to close. It relies on voluntary workers, almost 200 of them, and provides an enormous range of supports. Its unit, which is based in Athenry and serves Roscommon and Galway, had no service at all for people with autism for the whole of 2013. Report after report was produced on that but the service got worse.
The Minister of State's predecessor conveniently avoided telling us when the report was commissioned, when it was published and why there has been a delay. I became aware that the report had been commissioned in early 2017 and was completed at the end of that year. It has ten recommendations and nine themes. The whole of 2018 passed and it seemed the report had not been published until we in Galway asked questions. The common themes which emerge in the report are the lack of clear pathways, there being no support, no training and so on. The most important thing is that an implementation body would be set up to implement the report. It is only being discussed tonight because Sinn Féin has brought forward the motion. In three paragraphs in the Minister of State's four-page oráid, which was not very helpful, there was a distinct failure to talk about the report and why it was not implemented.
The report refers to many other reports. Although I will support the motion, the last thing we need is for another committee to sit on the issue and for there to be more reports. What we want is implementation, and if this motion helps with that, it will certainly have my backing. To quote one respondent in the report, however, "Not another review into services for individuals on the autism spectrum [...] it will probably make access to supports and services more difficult than they are at present". Another said: "Adult services are unidentifiable or non-existent." It refers to six reports but I have added a seventh, namely, the report of the Galway Roscommon autism spectrum disorder service from November 2016. None of its recommendations was implemented. In fact, through parliamentary questions I have learned that the waiting list for services at the Athenry unit has increased. It is now at 31 months for intervention and 27 months for assessment. The non-existence of these services is why we are here tonight.
I welcome the motion. I reiterate the crux of the motion, which states that many of the barriers people with autism face are a result of how society responds to those with the condition. We would do well to remind ourselves that our duty as public representatives is to break down those barriers and provide the necessary supports so that anyone, regardless of disability, can participate in daily life to his or her full potential.
I believe the current Government has placed more impediments before people with autism trying to achieve their full potential. The main impediment has been a chronic lack of funding during and since the recession. Legislation and strategies are all well and good but will go nowhere without adequate funding for existing and new supports for people with autism and their families.
I will concentrate my comments on one service that I have been in touch with, a community support service in lnishowen in my constituency of Donegal and one the Government is no stranger to due to the number of times the Department has refused to assist it, despite numerous meetings.
Inishowen Children's Autism Related Education, iCARE, was set up in September 2000 by a small group of visionary parents of children with autism. In 2006, they opened a centre to provide respite care for these children and their families. It is a community-led provider of high-quality personal and social services in Inishowen and its funding mainly comes from the community via various fundraising initiatives. All its services are delivered by volunteers, some casual part-time staff and four Tús childcare workers. However, sourcing funding has been a chronic problem for iCARE and a source of great frustration for all involved with the service provider.
I spoke with Ms Angela Tourish, the chairperson of iCARE, about this ongoing struggle. The group received €36,000 from the HSE last month, despite a costed request for €100,000. This will soon run out, yet demand for its services increases. Eight referrals were made in the past six weeks and, in an ironic twist, most of those children were referred to them informally by the HSE and Tusla.
Last year, the Donegal charity faced closure after it lost out on funding from the Department of Employment Affairs and Social Protection. The Minister of State with responsibility for disability issues, Deputy Finian McGrath, will recall that he had allocated €16 million in funding to 27 projects under the Ability programme, half of which were located in Dublin. Only one service in Donegal received an allocation but that was not to iCARE.
Ms Tourish said something to me that stuck out and represented what the charity is going through. She stated that closure is always around the corner for them. It means they cannot make projections or plans for the future and they are living month by month with this hanging over them. Despite this, they provide vital services with referral from the HSE and Tusla. This is what we force them to do.
Services such as iCARE should not have to live with closure around the corner. iCARE can provide that model of community-led care much needed in Donegal and elsewhere. Community-led services work for children and adults with autism as they provide care within the local area where they can thrive within their own communities.
We also need to consider continuity of care and service provision throughout the life cycle of an individual with autism. First, supports and outlets need to be provided for those aged 18 and over or as soon as they leave school. Second, there continues to be a lack of ASD special class places at second level. These classes do not receive a cent in year-on-year funding while primary schools receive €680 in additional capitation per student per year. This needs to be equalised so that children with autism can have continuity of care and support throughout their lives.
I qualify everything stated in the motion by calling for a commitment from the Government to provide multi-annual State funding to services such as iCARE and to provide an adequate budget for both State and community-led services with the potential for many more services to open up and deliver for people with autism throughout their life cycle and within their own communities. It is vitally important so that the Department starts to support them.
First, I thank most sincerely the Sinn Féin Deputies for bringing this important matter before the House, I acknowledge World Autism Awareness Day, and I welcome each and every person who has come here this evening for this important debate.
The issue of the waiting time for children to be assessed is one of the biggest problems that I find in the county that I am elected to represent. Another is the lack of respite care for families. Funding for home support respite is needed. I see that at the coalface, the same as every other Member and every councillor around the country. Elected representatives are dealing with families who are struggling trying to get access to the vital services they need, whether it is getting the assessment in time or the funding for the supports. That is what we are trying to highlight here this evening. Autism-specific adult services are not available at present.
Extra resource hours are needed for schools. I thank from the bottom of my heart the teachers and SNAs for the work they do throughout the country. They are a valuable treasure, as the Ceann Comhairle will be aware in his own constituency. These people - I am not being patronising in saying this - are saints because of the effort that they put into their role and the work and nurturing that they give, in particular, to young people who are starting out in life and to whom we want to give the very best.
Just because a person might have a diagnosis of autism does not mean to say that his or her life has to stop. It means that we have to give the person with autism the resources that he or she requires to get the most out of himself or herself.
Finally, there is a lack of funding for Autism Assistance Dogs Ireland. I acknowledge how valuable it is when a child receives such a dog because assistance dogs, as the organisation itself states, are changing "the world for children with autism". That means so much because that is exactly what they are doing. They are like a lifeline. It is like giving them a little person to be with and to grow up with and it is so nice to see it when it is working well. I acknowledge that great group. They should get more funding for the great work that they are doing.
I will support the motion on what is, importantly, World Autism Awareness Day.
We need to break down the barriers that effect children with autism and their families. At present, the waiting lists for a child to be assessed are up to two years, and during this period, no supports are in place for families such as an occupational therapist or a speech and language therapist. I have met a family at first hand in west Cork in the past two weeks who had no other choice than to go away and get a private assessment done, which cost them €1,700. This was an ordinary family on a basic wage and it was a struggle for them. From where does the Government think families can come up with such sums?
I am not sure that the Government realises the vital importance of earlier intervention for children under six years. It is proven that a child's brain is developing at this age. If early intervention is provided, the child will have a better chance of going on to live an independent life, and has a greater chance of attending mainstream school, which would greatly reduce the need for more unit places. Surely, this would whet the appetite of the Government, if it thought it could make a cost saving because, in all honesty, the Government has no compassion for families with children with autism and there is no point in appealing to the Government on emotion as all it cares about, sadly, is money.
Over the past few months, I was involved in a local fundraising, "Lip Sync", in Bandon to raise much needed funds for Jack & Friends Support Centre in Bandon. This wonderful centre is run by local parents, such as Claire and Samantha, and is a wonderful amenity to the people of the town and surrounding area. What many may not realise is that the centre is wholly funded through fundraising and receives no State funding whatsoever. The centre has running costs of up to €22,000 a year and they are relying on the generosity of the people to keep the centre opened. In the past five months, this centre applied twice for a grant to kit out its sensory room for the children and on both occasions it was turned down. The centre applied for other grants for a table and chairs for the children and again they were turned down. It is clear that centres such as this need State funding. The likes of this centre are relieving pressure on the Government as they provide services that it should provide. It is high time that these centres and groups were supported by the Government.
I am also delighted to be able to speak briefly on this on World Autism Awareness Day and compliment everybody involved. My late brother was a paediatrician who was dedicated to issues such as autism, dyspraxia and dyslexia and I learned much from him. We have learned much over the years.
I salute all the families, all the guide dog associations and all the school special units. In my own area near the town of Clonmel we did not have a national school. We had a wonderful preschool. A year and a half ago, my own national school in Newcastle, and, indeed, Burncourt national school set up two units, but people have to travel that distance from the town. This year, Clerihane national school has decided to take two rooms and wants to set out the principles. The teaching staff and the parents' council, and everybody else, including the board of management, have bought into it. We need more of those.
We need more early diagnosis. People should not have to pay large sums to go off and get diagnosis. It is a shame and a scandal to have young people presenting with different symptoms, waiting for assessments and having to go private. That is blackguarding. It is not fair to the people. Families have enough to deal with. With other siblings and everything else, it can be challenging.
I salute the parents and everybody involved. I hope we can make better strides here because earlier diagnosis is vital in any of these cases, especially those with autism.
They must be able to move on.
Holy Trinity national school in Fethard decided in 2017 to go ahead with a unit. Again, it was agreed by parents, teachers, the principal and the board of management, but because of bureaucracy in the Department, the project must be retendered. That should not have to be done when the community wants to buy into the idea. The system should support those schools, as it should support families when it does not. Families need that help and it must be given to them. The Minister of State has much serious examination to do and many blackspots must be sorted out. I welcome all the people to the Gallery and thank them and everybody involved in this area.
I thank the Rural Independent Group for allowing me time to speak. Many of my colleagues would like to speak tonight but there is just not enough time. On this World Autism Awareness Day, I support this motion and the principles behind it. The inconsistencies that exist in accessing services for autism in the State must be addressed.
I will speak to one issue, which is the waiting time for a child to be assessed. Delays in getting assessed result in delayed interventions, and this can ultimately affect the development and well-being of the child. Every Deputy in the House will say that this is what they are met with every day of the week, with parents coming in who know their child needs an assessment but who have to wait two to three years for it. Parents have enough on their plate when looking after children with disabilities to have to fight the State and bring a court case so their child can get the required intervention.
At the end of 2018, there were almost 3,600 children waiting longer than the three months put down in statute. We need to get our act together. Children with disabilities and different needs have for too long been forgotten about by the health system. We are only making this worse for children and their families by delaying intervention. Every one of us knows a child with autism. A special little girl visits my house and her name is Tia. It is so important that every child would get every opportunity to be the best that he or she can be. The only way to do this is to implement the correct supports.
I commend Deputies Funchion and Ó Caoláin on their work on this matter to date. It is very timely and I hope the Government will listen.
I support this motion and thank Sinn Féin for putting it forward. I have a vested personal interest as I have a son who is autistic. Everything I have heard tonight is familiar to me and we have had a typical experience. We have a lovely young boy, a twin, and Tommy was verbal so we did not really notice for the first few years. As time went on, we started to notice and we experienced everything I have heard about tonight. It took us three or four years to get a diagnosis and we had to go private in the end to get it. We had to take our son Tommy out of ordinary school as he would never cope independently that way.
We have been lucky since and it is not all bad. He is in a bloody good school in the Setanta school on the Stillorgan Road. It is a specialist school. We must celebrate sometimes when there are facilities. If we do not recognise them, people might think they do not matter and no budget will be provided for them. Let us celebrate what is good and what has been done. Much good has been done and things are a hell of a lot better than 20 or 30 years ago, when we had practically no autism services. I say that as a parent. I say this knowing all the failings and having seen all that is wrong.
I will share some of my experiences. Much good comes from parents working together in support groups, for example. One might learn more from other parents than from the system. The system does not facilitate communication. We only found out about the school my son attends through a group called Open Spectrum, where we share information. It is over coffee beside the running track or whatever that one finds out this information. The school is only two or three miles from the house and we never knew it existed. Another parent told us and we suggested it to the authorities, so he ended up there. Sometimes the parents working together come up with very good things.
I speak about my own area but this does not apply to my son because he will never be able to integrate into an ordinary second level school. There is a real and acute shortage of second level schools where autistic pupils are integrated. Dublin 6 is the worst area in the country for this because we are so bloody posh. The schools are so high in the league tables that they cannot afford to have a school with integrated autistic students. Those kids in those schools will not grow up with other kids with disabilities, so they miss out on that part of their education. They may end up with a kid with special needs, and if they have not seen it in school, how will they know about the good and difficulties coming with that? That must change and every school, including the posh ones in Dublin 6, should be integrated. Some kids with autism can integrate with others and it would benefit the whole school for them to be there.
There was a great court case taken to defend the rights of autistic children to an education, and the Department's response was that because of its limited resources, once a child turned 18, that would be the end of it. That is a bit of a pity as there is a real gap when people turn 18. Last but not least, sometimes we seem to be engaged in a process of getting rid of all institutional community settings. What has happened to Camphill in recent years breaks my heart as I see it as a brilliant institution. We were kind of hoping our Tommy might end up in Camphill, and it could have been a perfect alternative home. We should not disperse everybody into the community and we need some institutional group settings. Let us check the science and facts about putting everybody into the community. Some adults are not really able to cope in that way, so maybe we still need some institutional care centres. That is my lived experience.
I commend Deputies Funchion and Ó Caoláin on bringing forward this motion. I confirm my support for it. I welcome everybody in the Gallery and salute the teachers, parents, advocates and everybody involved in autism support services. There are 14,000 students in the country with an autism diagnosis, which is a significant number. In the very short time available, I raise again a matter that I have raised on numerous occasions, which is the assessment of needs. I have raised this with the current Taoiseach and previous taoisigh. We all know there are major delays with assessments of needs despite the HSE being obliged under statute to commence an assessment of needs within three months of notification and to finalise it within a further three months. In Tipperary, those assessments of needs take 24 months to commence, and this has been the case in recent years. There is a further waiting period after this extending to 18 months across Tipperary. Parents are forced either to go private or to seek assistance from the likes of the Society of St. Vincent de Paul. The vast majority of children are languishing on the waiting lists for the periods I have described.
I have asked the question before but I will ask it again of the Minister tonight. Why is the HSE allowed to breach the law? There is a statutory obligation on the HSE to do these assessments within the timeframes specified, but it is being broken daily. It is a matter for this House and the Minister to ensure the assessment of need is done within a specified timeframe. I support the motion and regret that I have such a short period in which to speak to it. I wanted to mention school places, particularly at primary level, as well as the lack of autism-specific respite services.
Will the Minister of State confirm that what was in the speech of the Minister of State, Deputy Finian McGrath, is Government policy. He did not get to read the part where it states, "it is not proposed to pursue legislation or an Oireachtas committee on autism". He said the Government would not oppose the motion, but that line would suggest the Government will not support it.
It was my understanding, from listening to all Members tonight, that all Opposition parties will support this motion because it is long overdue. We are far behind most European countries in terms of having a clear strategy for people living with autism and we continue to have long waiting lists for assessment and access to therapies. We still have a significant shortage of ASD places in schools and there are problems with transport. Every September, I see parents who are beside themselves with worry because of the lack of appropriate school transport for their children. A constituent of mine with several children who have been diagnosed with autism spectrum condition has told me how she spends ridiculous amounts of time chasing up various State bodies and Department to make sure her children's needs are looked after. There is no joined-up approach so if she does not do it, her children will not receive the treatment, care and services they need. One of her children was told last September that there was no school transport place for her and that it would take six weeks to organise it despite her having applied the previous April. Is this supposed to be acceptable? Is a parent supposed to take time off each morning and afternoon for six weeks or is the child supposed to stay at home for six weeks? Sadly, this is not an isolated incident. There are many other cases I could mention.
The State needs to recognise and support the needs of people by setting up an all-party committee to deliver an autism empowerment strategy for Ireland. I, and, I am sure, other Members, would appreciate it if the Minister of State would confirm whether it is Government policy not to do so.
I welcome everybody in the Chamber and the Public Gallery. Often it is quite difficult for people with autistic children or autistic adults to look after to get away so it is great to see so many people here. I thank Deputies Funchion and Ó Caoláin for bringing forward this motion, which is incredibly important and long overdue. Many of us have met stakeholders since we were elected. This is a progression of what we were trying to do. There is not a single one of us who has not experienced people coming to his or her constituency clinics in a desperate state whether it is about looking for a school place for their child, services or assessments. The situation, which involves children waiting, is criminal. The Government is obliged to see them within a specific timeframe but it does not do so. It is a scandal. I do not have to tell the Minister of State that early intervention is key for people with autism. I know that given the right support, many people with autism can participate meaningfully and make a valuable contribution to society due to a different way of seeing and understanding the world. When identified early, important supports can be put in place to ensure people are enabled to develop strategies that make their lives easier. Early interventions also aim to develop skills in communication, social interaction and imagination that underpin adaptive function to provide the person with the highest possible quality of life.
It is vital that adequate resources are in place for people with autism to ensure they get the support they need in the classroom and areas like speech and language therapy. Schools at all levels from private preschools up to secondary schools need to ensure they have the resources in place to make it as easy as possible for people with autism. These schools must ensure they are open and welcoming to people with autism and provide for their needs. I echo the comments of Deputy Eamon Ryan. It is not just Dublin 6 that has posh schools. They include schools all over the State and my own city is particularly bad in that regard. These schools want to be top of a league and exclude children with disabilities, children with autism and Traveller children. They should be ashamed of themselves. They do it non-stop. The Minister of State knows that the Minister for Education and Skills will not insist that local primary schools that are feeder schools for these secondary schools take these children. We will not stop that unless we look at that issue as well. The current range of services are not consistently available across the State. When people try to access them, it is really difficult.
The motion calls for the establishment of an all-party committee on autism with input from people with autism, which is crucial, and their families. I would particularly like the committee to look at the supports that need to be developed in our workplaces to give people with autism the full range of supports needed to enable them to participate in the workplace. I thank my colleagues for bringing forward this motion.
The point of tonight's motion is that we want to get cross-party agreement to set up an all-party committee to be tasked with finally delivering an autism empowerment strategy. The current situation, where we have no strategy, is crazy despite such a strategy being in place in most European countries. That we must go to this length and table a Private Members' motion to get something so basic for those families in the Public Gallery and those listening at home shames this House. Like others, I have had families come to see me. The system in my constituency is broken. There are 11 units in the primary school sector. There are no suitable secondary schools. Perhaps I am not great on maths but where do these children go? The parents want to know where to send their children. Does the Minister of State have an answer because the parents are looking for answers and that is why they come to my office? They have nowhere to send their children in the secondary sector. There are 18 suitable secondary schools in Dublin. People across Dublin are asking where they should send their children. It does not add up.
We know from the last census figures that the population is growing. As we are getting better at identifying these issues in children, demand will grow and we need to put resources in place. When I ask questions, the only thing I hear is that 100 workers will be deployed in this area. When I asked about the unit that is supposed to be established in the CHO 7 area, I was told that there is no team manager, the post of staff grade educational psychologist has been vacant from 14 December, there is no staff grade psychologist or occupational therapist and many other key positions are vacant. Clearly, children are going into the system but it is going nowhere. A reply from the HSE informed me that the waiting time for the school-age team, SAT, is 42 months and growing monthly because the team does not have the capacity to safely take on additional cases and that there has been no movement on the waiting list in the past 12 months due to the volume of children who are transitioning from early intervention services, the capacity case load of team members, delays in filling vacancies and maternity leave positions not being filled. The system is broken. What do I do? I write to the Minister of State, the Ministers for Children and Youth Affairs and Education and Skills, and the Minister of State with responsibility for disability issues, and they all tell me it is not their area but somebody else's area but at the end of the day, where do these families go? I am encouraging families to take court cases to get their rights. Something is wrong with the system and nobody will tell us where those families are supposed to go, so it is wrong.
I thank Deputies Funchion and Ó Caoláin for bringing forward this motion. I have spoken to the Minister of State many times about issues. A lady in south Leitrim emails me every day with emails she has copied to the Minister of State. This issue has been ongoing since early this year. I printed off one of the emails from 12 February. She received an email telling her that her son would receive services in the Callan Institute in Dublin through Saint John of God community services. She was delighted. Everything was going to be great. Her son has not yet received that service. Today, she sent me an email that was also copied to the Minister of State in which she said her child had a meltdown in school and threw chairs at the teacher. She said that the family was still unsupported in any significant way to help it learn to manage these behaviours or gain any understanding of the root cause of them. Wonderful steps forward are being made in terms of recognising the strengths of autistic people but we desperately need to focus on addressing how to manage and support the significant challenges faced by so many autistic people. We are continuing to disable autistic people by not offering the appropriate supports. We need to get a grip on this right now.
I advise the House that the Minister of State, Deputy Finian McGrath, had to leave to attend a Cabinet meeting, which was called this evening.
We all share a common desire to have the best possible policies and services for all children, adolescents and adults with disabilities. Both personally and as a Minister of State, I want everyone with additional needs, including those with autism spectrum disorder, to have access to necessary supports in every aspect of their lives to enable them to achieve their full potential, maximise their independence and live rich and fulfilling lives.
In recognition of the cross-departmental nature of the supports required by people with disabilities, in 2017 the Department of Justice and Equality published the National Disability Inclusion Strategy 2017-2021. The strategy takes a whole-of-Government approach to improving the lives of people with disabilities, both in a practical sense and in creating the best possible opportunities for people with disabilities to fulfil their potential. It is intended to make a significant difference over its lifetime in the position of people with disabilities in Irish society. Under the strategy, the Government is committed to ensuring people with autism will be empowered by policy and programmes to participate meaningfully as citizens in Irish society. The strategy is driven by this basic but fundamentally important objective and the most effective combination of legislation, policies, institutional arrangements and services to support and reinforce equal participation for all people with disabilities. It was informed by a comprehensive consultation process that took place during 2016 when an open call was issued to people with disabilities, their families and disability organisations.
The actions included in the national disability inclusion strategy generally relate and apply to people with disabilities, but it also contains specific actions in respect of autism. The programme of actions on autism is in keeping with the cross-disability, whole-of-Government, social model of disability approach set out in the national disability strategy implementation plan. It also recognises, however, that an increased understanding of autism across the public sector is required to ensure the implementation of the plan will address the needs of people with autism.
My colleague, the Minister of State, Deputy Finian McGrath, and the Department of Justice and Equality established the national disability inclusion strategy steering group, which is responsible for monitoring implementation of the strategy and comprises representatives of key Departments, the NDA and the disability stakeholders group. As outlined previously, the HSE is implementing some major policy initiatives in children's disability services. The policies have the common goal of improving service delivery for all children with additional needs, including those with autism. We want to ensure there is equitable access to services, that waiting lists will be reduced and that all children will receive the supports they need when they need them. The planned publication by the HSE of an autism plan later this year further shows the Government's commitment to improving services for children and adults with autism.
Inclusion of children with special educational needs, including those with autism, has been and continues to be a priority for the Government. The move towards allocating supports based on need rather than diagnosis is mirrored in disability health services. This is a really important policy as it reflects the diversity of individuals and the multitude of needs that can hide behind a common name. The Government will continue to strongly support provision in special education in order to ensure an inclusive model of education which will have regard to the policy advice of the NCSE and be informed by what is appropriate in meeting the educational needs of children in schools. The NCSE is undertaking policy advice on educational provision in special classes and special schools. In the course of preparing the advice the council will consult widely with stakeholders. The policy advice is to be completed next year.
I again thank Deputies for highlighting this important issue on World Autism Awareness Day. I reiterate the Government's sincere and ongoing commitment to the improvement of services and supports for all individuals with additional needs, including those with autism. The national disability inclusion strategy provides the blueprint for improving services and it is by working together across Departments that we will make a difference for all people with a disability.
Yes and with two other Deputies.
The Minister of State did not answer the specific question he was asked. His colleague, the Minister of State, Deputy Finian McGrath, distributed copies of his script before he left. The third last bullet point on the last page reads:
In light of the comprehensive actions in progress across government, the ongoing engagements with people with disabilities and representative groups and having regard for Government policy on mainstreaming, it is not proposed to pursue legislation or an Oireachtas committee on autism.
The Minister of State might not have had the nerve to read that bullet point, but we can and the people in the Visitors Gallery and those listening to and watching this debate at home can see what this is. It is the Government patting itself on the back and stating it does not need to take any action because everything it is doing is grand. However, everything it is doing means that parents in my constituency have to wait 36 months, or three years, for services. They have to wait 18 to 24 months just for an assessment. The Minister of State has talked to mothers in my constituency; he should talk to mothers in his own. It is a battle. That is the word they use. They battle with the system and the Government and they battle and fight for their kids, yet the Minister of State has come here with a script that states, "it is not proposed to pursue legislation or an Oireachtas committee on autism". That is precisely for what the motion calls - the establishment of an Oireachtas committee. It is supported by every other party and Independent Deputy, but the Government has come here and not been honest because the Minister of State left out this line from his speech to the House. However, I can see it and have read it and the people watching this debate will understand exactly what it means.
The Minister of State, Deputy Jim Daly, was asked by my colleague, An Teachta Munster, to clarify the Government's position. It is very clear - since he did not move to address the question - that the Government does not propose to support the motion in any meaningful way. Rather, it will merely let it pass, but it will not take any action, which is not good enough, as the people concerned deserve better. We have heard fine words all evening for people who are dealing with autism and the system. We have spent the entire evening talking about how they deserve to be treated better. However, the message coming from the Government is that it is going to say fine words, but, in truth, it is not going to do anything. I really regret that the Minister of State did not move to clarify the Government's position and I think the people in the Visitors Gallery probably do too, although they will just add it to the list of things they regret because every single day they deal with what the Government is doing to people with autism and their families in the battles they have to fight.
I had a script - I was going to focus on health issues - but I am extremely angry that the Minister of State has not addressed the issue raised with his colleague, An Teachta Finian McGrath.
I commend Deputies Funchion and Ó Caoláin on bringing forward the motion. As a society and certainly as a state, we are failing people with autism. Every child deserves a chance to develop and grow to achieve his or her full potential and every time the State and society fail to provide services, assessments and supports, it becomes that bit harder for a child to reach his or her full potential. As a society, we are failing children with autism and nowhere is this more true than in Cork. There are many statutory funded schools and organisations that do great work, including Scoil Triest, St. Gabriel's, Sonas, the Brothers of Charity and Scoil Cara which I have mentioned in this House on many occasions when discussing multidisciplinary teams. However, despite the efforts of these agencies, we have inadequate services. We have the worst waiting lists in Ireland, with the number of assessments awaiting completion in Cork city and county at the end of last year at over 1,000. When assessments are not carried out quickly - invariably they are not - services are slow to follow. They are slow to follow in any event. What Deputy O'Reilly said registered with me having regard to what I hear from parents. It is a fight. Everything is a fight. If one needs services for one's school, it is a fight. If one needs services at home, it is a fight. Everything they get and whatever they get which is usually a long way short of for what they might ask or require comes following a fight.
We are fortunate that in many instances community and voluntary services have stepped up to the mark. I highlight, in particular, the Rainbow Club which is based in Mahon Community Centre in Cork. It was started in 2015 by Jon and Karen O'Mahony. It has since grown to operate at full capacity of 623 children. There is a waiting list of more than 226 families. People are often referred to it by the HSE when they cannot access other services. It is incredible to me that a voluntary service would have a waiting list of this scale. It says to me the State is failing when a voluntary organisation has had to step in.
I also commend Tony O'Donovan from Togher who has piloted autism-friendly shopping days in many shopping centres.
Those are voluntary efforts, however. The Government needs to step forward and show the same initiative as those voluntary organisations. That is what we need and that is what this motion is calling for.
Gabhaim buíochas le mo chomhghleacaithe, na Teachtaí Funchion agus Ó Caoláin fa choinne an rúin seo chun comhairle a éileamh ar an Rialtas. We have heard many stories from people recounting their experiences of children and adults with autism. We have heard much support for the motion. I also listened to the Minister of State and his comments on what the Government is doing and how it is supporting this motion. It was disingenuous, however, to stand up, deliver a ten-minute speech and leave out the two lines which indicate the position of the Government on this issue. The Government is not going to legislate and is not going to set up a committee. Children with autism are literal. When they hear the Government is supporting this motion, they expect it to follow through, establish the committee and legislate.
It is a terrible slight on them and their parents. We have heard about the slog, the difficulty, the challenges and the fighting required all of the time to get different services. We have also heard of the anxiety and worry waiting for an assessment and what the results will show, then follows the repeated fight for resources for therapies and access to all of the different supports that should be there to help. It is a case of fighting the system, however, rather than being comforted by it. One issue the Government has not acknowledged is that the current system is failing children in myriad ways. I refer to delays in assessment, the lack of supports available, the lack of educational supports and the lack of available places. All of that is failing children. The motion seeks something simple. It asks that we get together as legislators who want to see, recognise and value the unique way in which children and adults with autism see this world. Let us come together and develop a strategy and let us underpin it with legislation. The Minister of State should do the right thing and support the motion tabled by Deputies Funchion and Ó Caoláin. It deserves the support of all of us in this House.
I thank all colleagues, from my party and the other parties, for their support, comments and personal stories. I refer to Deputy Eamon Ryan, in particular, for his personal insight. I thank everyone who told their own story. As can be seen, we all know the situation. Everything is a battle. I refer to everything from before getting a diagnosis, to securing school places and occupational therapy all the way through to becoming an adult and trying to transition into adult services where there is a lack of respite and day services. The list is endless and the battle is constant for parents.
Whether the Government decides to support the motion or sit on the fence, we know we have the support of the majority of Deputies in this House. We will call a vote if we have to and we are not giving up on this issue. I appeal to the Ceann Comhairle. We have majority support and we will ask him to set up the all-party committee. I believe that is within the remit of the Ceann Comhairle and we have always found him to be fair and reasonable. We appeal to him to support that as we have the majority. I state that because the committee is needed to develop a strategy. We do not have one and we need one. All these problems are not going to go away. The important thing about the all-party committee is that it will deal directly with people with autism, parents and advocacy groups. All of the people watching from the Public Gallery will have an input. That is crucial.
My colleague mentioned some of the groups earlier but I want to also briefly mention Enough is Enough, particularly Linda and Vanessa, for the work done and their input into the motion. I thank them for the support and advice they give me. I also want to mention one of the first cases I ever dealt with. I will not mention the name, but his parents will know who I am talking about. He is an amazing, fantastic teenager failed repeatedly by this State who has not had the opportunity to finish his education. The responsibility for that lies at the door of the Government. We are not giving up on this issue. I want to make that clear. We are going to keep fighting until we get the committee and that strategy.
Finally, behind the scenes in all of this are staff who worked hard in helping to draft the motion and deal with people like me. I thank Dee, Avril, Kaniah and Michael for all their work on this issue. I again sincerely thank those in the Public Gallery. I reiterate our commitment to them. This is just the start.
While it would be inappropriate for me to enter into the debate on a matter like this, it would be appropriate to state that the House has reason to be grateful to Deputies Funchion and Ó Caoláin for bringing a motion on this particularly important matter before it on World Autism Awareness Day. I also acknowledge that there seems to be unanimity on this matter. While there may be some difference in nuances, we can all work together to try to find a way forward.