Wednesday, 17 May 2017
Autism Spectrum Disorder Bill 2017: Second Stage
I move: "That the Bill be now read a Second Time."
I welcome the Minister for Health, Deputy Simon Harris, to the House and thank him for appearing in person for the Second Stage debate. I also thank Senators from all parties and none who indicated support for the Bill, which is much appreciated. I also thank the Minister of State at the Department of Health, Deputy Finian McGrath, for his support.
In 1998, I and a number of other parents, some of whom are in the Gallery, sought an amendment to the 1997 Act to close off a loophole which provided parents of children with an intellectual disability with a derogation from the requirement to attend school. This provision was being used rather cynically by the Department of Education to obviate its obligation to provide education for these children. I remember the occasion well. We had been invited to the House by the then Senator Dick Roche. It was as a result of this issue that I became involved in politics and ended up on my local health board. It is only right, therefore, that I address it again today. I never thought then that I would introduce this Bill in the Seanad nearly 20 years later.
Autism spectrum disorder is primarily characterised by delayed or deviant communication in both verbal and non-verbal social interaction. Many people with autism and Asperger's syndrome do not recognise social cues. We all know, especially Senators, how we can communicate with each other non-verbally. Social impairment is a major issue and repetitive, stereotyped or ritualistic behaviour, including self-stimulation or "stimming" as it is known, are also characteristics of autism spectrum disorder. All of these features may occur in widely varying degrees of severity and in many different manifestations. They can be so severe that a child may be diagnosed at an early stage in life and require 24-hour care. In other cases, however, the symptoms are so mild that a diagnosis is not made until middle adulthood.
I will briefly address the struggle parents have endured in this regard. Rather than discuss the work of Leo Kanner and Hans Asperger in the 1940s, I will go back only as far as the 1960s, which were not a good time for parents of autistic children. At that time, mothers had to endure the belief, made popular on chat shows by Bruno Bettelheim, that they were responsible in some way for their child's autism. Imagine the parents of a child who had been given a devastating diagnosis with no cure being subsequently told that they were bad parents. Women, in particular, were told they were cold and described as "refrigerator mothers". Fortunately, many mothers had good sense and one of them, Clara Parkes, a professor of English, had the courage to write a book in which she asked how she could be a perfectly good mother to two of her three children but somehow not a good mother to her third child. This view, she argued, did not make sense and was not logical.
Professor Parkes and many others started a movement that questioned this approach. Bernard Rimland was heavily involved in this campaign and was very committed to the cause. I was astonished when he answered a telephone call I made one evening to his home in the United States because it was 1 a.m. in America. He spoke to me that time and answered a call from my wife on another occasion.
There followed a period of greater awareness and enlightenment, and the 1970s saw significant leaps forward in studying the nature of autism and its treatment. The first major twin study, which was carried out by Professor Michael Rutter in England, showed a genetic link in twins. Lorna Wing's book, The Autistic Spectrum: A Guide for Parents and Professionals, was a powerful counter to the book, The Empty Fortress, by Bruno Bettelheim who had coined the "refrigerator mothers" term. Lorna Wing believed not in a different syndrome but in a range of disorders.
While the incidence of autism in the general population was believed to be 1 in 5,000 in the 1960s, the Camberwell study of 1979 showed it was closer to 1 in 500 and we now know it is 1 in 68. Whether the most recent figures indicate an increase in the incidence of autism alone or a combination of better awareness and diagnosis and increased incidence is still a matter of conjecture.
Ireland had its own champions in this area, Pat and Nuala Matthews, and they are present in the Gallery. It was not until 1979, however, that the World Health Organization officially recognised autism. As a member of a health board in the early 1990s, I spent a year trying to convince an inspector from the Department of Education that autism even existed. Having finally convinced him, he refused to accept the need for a different educational approach.Therefore, children in those days were diagnosed with great difficulty and, even then, there were few if any services available. They were seen as emotionally disturbed and were educated with emotionally disturbed children who were otherwise normal. This had a negative effect on both sets of children. The situation for adults was much worse. Autism spectrum disorder, ASD, specific interventions and services for adults were almost non-existent, reflecting the lack of understanding and investment in provision for adults.
Research from Irish Centre for Autism and Neurodevelopmental Research, ICAN, has highlighted that many individuals with ASD have symptoms of co-morbidities, including seizures, gastrointestinal disorders, sleeping problems, feeding and toileting problems. Adolescents, adults and older adults are under-studied populations They have difficulties with social relationships, residential independence, employment, social inclusion and independent living skills. This is the month of mental health. These people have many mental health issues, with anxiety disorders and depression being much more common in adolescents and adults with autism.
As a group, people who have autism are more than twice as likely to die prematurely. Autism research finds the mortality rates to be two to ten times higher than normal among various groups with autism. People with autism die younger. Accidental injury was the leading cause of death at a rate three times higher than in the general population. The autistic child does not look back. The normal child will walk down a beach and keep looking back for reassurance. The autistic child just keeps going. I have my own story about that. On one occasion, our son got out under the gate unbeknownst to us when we were on holidays. When we realised he was missing, panic ensued. We hopped over the gate - I was a lot more agile in those days - ran down the road and another road, saw a group of people and asked them whether they had seen a child in nappies. They said, "Yes, he has gone that way." I was astonished that they did not stop him but we caught him. He was literally on the verge of crossing a main road, a busy main thoroughfare. He would not have survived. One of the more astonishing statistics is that children with autism are 160 times more likely to drown than children across the general population. Suicide and epilepsy rank only behind birth defects as the most common causes of death. Premature death for autistic people is higher across nearly all causes. We must address this and shift attention to addressing the preventable and treatable issues and conditions that drive these disturbing statistics.
In the short time I have, I will talk about the difficulty for parents, particularly in the past, who are so desperate as orthodox medicine fails them that they will look to anyone who offers help. Of course, that makes them very vulnerable so they try things like methodology and craniology. I remember saying to my wife that when all those things failed, she would probably go looking for codology if she thought it would help because that is the desperation. People need to be protected from these charlatans, some of whom are medical people.
While some progress has been made in our understanding of ASD, no consensus exists on how to screen and diagnose for it or provide clinical care or educate people with ASD. That is not just the case in this country but right across Europe. However, other countries do have an ASD strategy. England, France, Canada, Scotland, Wales and Northern Ireland have strategies and we need one too. We need one in order that we can address this ever-increasing problem that will be a huge burden on the finances of this State if we do not intervene at the appropriate time, diagnose early and put in place the supports that can allow people with this condition to live a much more independent life. I do not know how much more time I have.
I will truncate what I have written down. The Bill has various sections. Normally, I would go through them but I do not have the time. There are some very important things in it that are different, including things relating to advocacy and legal representation and, equally, the need to involve parents. We have excellent medical experts and allied experts in speech and language and behaviour therapy and other areas in this country but the expert on the child is that child's parent or parents. Unless both sets of experts are fully involved in the planning, care and delivery of any therapies that are needed, that child will not get the best result and society will suffer as a consequence because even the most profoundly affected of people on this spectrum can be more independent and have less challenging behaviour if they get the help the need. Lest there be any doubt about this, I will tell one story about visiting a major health institution regularly as a GP. I overheard one nurse saying to another, "His teeth will have to come out. We had better get the GP to sign him up to see the dentist." When I arrived, the gentleman in question got very disturbed. He used to bite people. He had bitten people's ears off and I had to re-suture them on and there was a lot of discontent about it. I arrived and said that I heard they were talking about X and was told we would have to get them out. I asked whether they thought that was the only way and was told that was what we needed to do. I said I would send for the dentist and get all his teeth extracted, but I then asked what they would do when he started thumping people. Would we amputate his hand or would we amputate his leg if he kicked them? Thankfully, there is a more enlightened approach now. Although I was the visiting GP and was not in charge of this person's mental health care, I could see that all he needed was to be given the space to eat his meals away from others and not be crowded by others who were equally challenged intellectually and would not understand his need for space. All that behaviour ceased.
In short, what we need is a strategy that cuts across all Departments and acknowledges that every Department has a role to play and needs to be informed. I am very pleased that the Minister for Health is here to take this Bill. I know he has a particular interest in this and will drive it. This Bill will ensure in law that a strategy will be in place within two years. I hope it will be in place sooner than that and I am sure the Minister may have some good news for us on this. The Bill will ensure the strategy will be reviewed regularly and that there will be an onus on every Department to report back on progress made to provide the proper services because the Department has been properly informed about the needs. This need not cost a huge amount of money. What it needs is understanding, including an understanding of how to get the best value for money. I specifically have not been prescriptive regarding what this strategy should do in legislation. It is far too complex and it needs to be left to the strategy. I assure parents who are in the Public Gallery, supporters of this Bill, medical experts and NGOs that they will have an input into this strategy. If we need to table an amendment to achieve that, we will do so on Committee Stage. I will not presume upon the Minister's goodwill but I see him nodding assent.
I again thank everyone in this Chamber from all parties and none and the more than 12,000 people who signed an online petition to support this. I ask them to keep supporting it and spreading the word because we do not want this Bill to run into the sand on Committee Stage. We want it to go through Committee and Report Stages in the Seanad and on into the Dáil where I have every faith and confidence in the Minister and the Minister of State, Deputy Finian McGrath, to see it through to the end.
I welcome the Minister to the House and very much appreciate him being here for this Bill. I thank Senator Reilly for bringing this legislation forward. It is very important. The one warning I would sound relates to the fact that Senator Reilly brought forward a Bill in 2009 when he was a Deputy relating to medical practitioners and the need for insurance. Less than an hour ago, we signed off on the final stages of the Department's Bill. I followed up Senator Reilly's 2009 Bill with a Private Members' Bill, but I am glad to say this Bill has now gone through. I hope we do not wait eight years for this legislation to go through because it is very important. It is so because of the families and people for whom the Bill aims to cater and provide the necessary supports. It is about developing an ASD strategy. It is very important we do this. It is about the Minister consulting each Department, the Executive and all the people involved in providing services for those with autism.It is also about ensuring that there is a clear system of accountability, which is important.
As set out in section 3 of the Bill, the autism spectrum disorder strategy concerns access to health care services, education, employment and any service provided by a public body, social inclusion, access to advocacy services and the provision of legal aid where required. It is about ensuring that any service, such as speech and language therapy, occupational therapy or behavioural therapy, is provided to people who require it.
Senator Reilly mentioned dental services. In the past two weeks alone, I have dealt with two people with autism who required access to dental services. I was surprised by the initial advice that they had received. After I handled their cases, the advice that they got was different. I am glad that the situation has worked out well for both. This issue is not just about medical services. I had to intervene to ensure that those people got necessary dental services. One was a six year old child and the other was aged in the 50s. It is important that there be a proper structure in this regard.
It is also important to note that people with this disability have a contribution to make. Senator Reilly is right in that this issue was parked down the years and we did not consider the contributions that people could make. My sister-in-law was looked after by her mother for more than 50 years and is now being provided with full-time care. She got involved in painting and drawing. Her mother had been told for 30 years that she did not have a contribution to make, but one of those paintings was exhibited at European level. Everyone has a contribution to make, regardless of the difficulties they face. It is important that there be a proper long-term strategy for people. It is also important that parents feel that the State is providing them with the necessary support.
We are facing major challenges in terms of people who need State support. This is one of the issues that has arisen at the health committee in recent weeks. We must not park it. It concerns parents who provide necessary care but where age is catching up with them. They find that they are not getting the support they require. We must address this matter urgently. I know a man who has taken his daughter to a day-care facility every day for the past 50 years. He is 79 years of age and drives the 15 or 20 miles in the morning and again in the evening. He will not be able to do that for much longer. It is important that people like him be given the support they need. The strategy can deal with these issues.
I welcome the Bill. It is comprehensive and well thought out. I hope that, in the not too distant future, this legislation will go through both Houses and be signed into law, given its importance. I also hope that I will not have to wait eight years.
I thank Senator Wilson. I will begin by thanking Senator Reilly for introducing this important Bill. I share his desire to ensure that people with autism have access to the supports they require to enable them to achieve their full potential and maximise their independence, including living as independently as possible.
I welcome those who have joined us in the Gallery, are following proceedings online or have signed the petition highlighting the importance of this Bill and calling on Ireland to follow other countries in developing a comprehensive national autism strategy. The people in the Gallery at whom I am looking are the advocates, people with autism and families - I recognise many faces - who have been working for many years to arrive at a point in this country where we recognise the need to pull together the various elements of the State and have a national autism strategy - not a siloed mentality of something being a job for this or that Department, but a single national autism strategy. I thank these people for the tireless work that they have done in bringing us to this day, which has inspired and encouraged Senator Reilly to table this Bill.
As most of those present know, autism is an issue that has been close to my heart for many a year. On a personal level, I feel that this Bill is significant. As a teenager when I sat in a cold hall on a February evening in Greystones in County Wicklow, having called a public meeting after being impacted by a family experience with autism and having asked people who were living with autism to come along and share their experiences, I could not have imagined that I would be in the Seanad as the Minister for Health proudly accepting this Bill to develop a national autism strategy. I assure everyone that I am determined to work with Senators and, in due course, Deputies on all sides of the Houses to ensure that we deliver this strategy.
I welcome the cross-party support for Senator Reilly's Bill. All parties and Independents in this and, I expect, the Lower House will put their shoulders to the wheel so that we can devise a wonderful national autism strategy. There is often criticism of what people call "new politics", but if this and the Lower House deliver a national autism strategy in which we work together across party lines and political divisions, the new politics model will have delivered something very important for the many people with autism, their families and society as a whole, and it will say much about us as a country.
I recognise the need for a strategic approach to enhancing the effectiveness and responsiveness of our services to meet the evolving needs of people with autism. This is becoming best practice in other countries, including our nearest neighbour in the UK. In devising a national strategy, we as a country are recognising the complexity of autism as a condition. Crucially, it allows us to consult with the autism community. All too often, we policy makers talk about and at people with disabilities. If we get this right, as we are determined to do across party lines, the consultation process in and of itself will enable people with autism to tell us what sort of society they want to live in and what services and supports they need. Consultation on the development of the national autism strategy is important in terms of providing us with an opportunity to tackle ignorance. Let us not fool ourselves - in many parts of society, there is significant ignorance of autism as a condition. Consultation will allow us an opportunity to raise awareness among our communities, neighbours, friends, policy makers and service delivery organisations. It will allow us to have a true national discussion about autism and the needs of those with autism and their families.
As Senator Reilly alluded to, the scope of the issues raised extends far beyond the scope of the health sector alone. Strong collaboration and joined-up thinking will be required from a number of Departments and stakeholders so as to ensure that we provide the best legislative solutions.As it is not just a health issue, as I think everybody here would appreciate, but touches on the remit of every and any Government Department, I assure the Senators that I will provide the political leadership to drive this within Government and work with colleagues in other Departments.
This evening I can announce two steps which will be very important in bringing us on the road to this strategy. I have requested that the HSE establish a working group spanning its different operational areas, which will look at the delivery of autism services in this country, consider the effectiveness of existing services, identify models of good practice - such models do exist in certain parts of the country - and identify where the shortcomings are. The working group will report back to me on service delivery and operational experience in respect of autism.
The second measure is that my Department will commission an epidemiological research study into the prevalence of and future projections for ASD. As a society, as policy makers and as a Government, we can only properly respond to the present and future needs of people with autism if we actually do the research. What is the prevalence rate of autism in Ireland? What is its projected future prevalence rate? What is the demographic make-up of people with autism here? I know from my own background that there is many a young child with autism who has now grown up into adulthood. There are many parents of children with autism who are now getting on in life and wondering what will happen to their sons and daughters. The research commissioned by my Department will help inform our strategy. When, then, can we have a national autism strategy? If we get those two pieces of work done now, which is my intention, I plan to progress the development of a strategy in 2018 enhancing the health services' response to ASD.
There is a clear overlap between these plans and the very important Bill presented by Senator Reilly. As I have said, a whole-of-Government approach will be required. We will need extensive consideration by the HSE, the Departments of Justice and Equality; Education and Skills; Social Protection; Enterprise, Jobs and Innovation; Children and Youth Affairs; and Housing, Planning, Community and Local Government of the implications of the approach proposed in the Bill. I wish to name all those Departments for the record of the House, as they are all stakeholder Departments with which we will need to work to make sure we have a comprehensive strategy rather than one which just looks at the health piece, important and all as that is.
It should also be noted that as we consider this Bill and as it progresses to other Stages, we will need a detailed examination of the legal implications and equity considerations arising. I intend to consult the Attorney General to ensure that there are no unintended consequences, including equality issues, as a result of making separate legislative provision based on a specific diagnosis. As a result of tonight's proceedings, my Department will request all Government Departments to consider the detail of the proposed commitments within their areas of expertise. I will work with the Senators and Deputies of the Oireachtas to feed these processes into the refinement of the Bill. I know Senator Reilly is very much open to engaging with Government and colleagues in order to make sure we have the best possible Bill, which will adequately and effectively reflect the cross-Departmental, multi agency approach that is required.
I welcome the platform provided by this debate to put on the record the Government’s position. As I have already said, the HSE working group will now set about identifying models of good practice that can be replicated. We need to be very conscious of the current geographical lottery in respect of the provision of services. I have talked to parents of children with autism, and in some communities the service seems to be significantly better than in others. We need to identify where it is good, and that good practice needs to become the model rather than the outlier. We will also have the Department's research and will progress the development of a strategy in accordance with the piece of legislation which I hope will pass in both Houses. That strategy will be developed next year and, in response to Senator Reilly's point, will involve comprehensive consultation with people with autism, stakeholders and those working with people with autism.
Since 1996, the overarching principle governing the planning and delivery of health 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 clearly set out in the current national disability strategy, NDS, which is based on a non-condition specific approach to the delivery of public services and the mainstreaming agenda. National strategies on disability policy such as the comprehensive employment strategy and the forthcoming national disability inclusion strategy have been led by the Department of Justice and Equality under the aegis of my colleague, the Tánaiste. This reflects the shift away from viewing people with a disability as a patient or as solely the responsibility of the health services, towards mainstreaming supports and services into local communities and wider society.
The national disability inclusion strategy, which will shortly be brought to Government by the Minister for Justice and Equality, will take a whole-of-Government approach to improving the lives of people with disabilities. This strategy contains a specific programme of actions on ASD. As many who are following this debate will know, the strategy contains eight themes: equality and choice; joined-up policies and public services; education; employment; health and well-being; person-centred disability services; living in the community; and transport and accessible places. Under those themes, 32 key objectives are identified. These are in turn supported by a range of specific, measurable - that is very important in any strategy - and time-sensitive actions that relate to the areas of education, employment, provision of public services, health, transport, and personal safety and autonomy.
I will dwell briefly on the issue of employment, which is becoming increasingly important. The role of the State in respect of people with disabilities is not just to write cheques to fund service providers. Its role is to meet the whole needs of the person with a disability. Many people with autism have a huge contribution to make when it comes to employment. They have skillsets in many areas, as Senator Burke outlined in respect of the area of art. We have to provide people with an opportunity to contribute fully to society. That is what they want and a comprehensive employment strategy is very important in that regard.
The national disability inclusion strategy is envisaged as a living document. We do not need another report to put on a shelf. It needs to be a living, breathing, evolving document. Implementation will be supported by independent analysis and advice from the National Disability Authority, and also by periodic review and oversight by the Cabinet Committee on Social Policy. As many people know, a significant programme of reform is under way in respect of how we approach the provision of disability services. I had an opportunity recently to bring legislation through these Houses which provides that any child in receipt of a domiciliary care allowance has an automatic entitlement to a medical card. That is one piece of stress less for families that are already often under pressure.
The Department of Health and the HSE's Transforming Lives programme aims to bring about significant and far-reaching change to the delivery of disability services. The national programme on progressing disability services for children and young people aims to bring about equity of access to disability services and consistency of service delivery. The early childhood care and education, ECCE, programme led by the Minister for Children and Youth Affairs incorporates a focus on the developmental level of children with disabilities, their functional ability and their needs. It does not focus on diagnosis, recognising that many children may not have a formal diagnosis at the time of presenting at pre-school.
The Department of Education and Skills will continue to provide a range of supports for schools which have enrolled pupils with special educational needs. The Department invests over €300 million annually in providing additional resources specifically to support students with autism in schools. The number of special classes has increased from 548 in 2011 to 1,152 across the country in 2017, of which 888 are special ASD classes. This includes 126 early intervention classes to support pupils with ASD.
I have mentioned the comprehensive employment strategy for people with disabilities, which sets out a ten-year strategic approach to our commitment to increasing employment opportunities for people with a disability, with a view to increasing the numbers and proportion of people with a disability in the work force. My colleague, the Minister of State, Deputy Finian McGrath is leading work on a task force on personalised budgets. It will make recommendations to the Minister of State by December 2017 on a personalised budgets model which will give people with disabilities more control in accessing health-funded personal social services, giving them greater independence and choice in accessing services which best meet their individual needs. Under the national disability implementation plan, we will shortly see a programme of actions on autism in keeping with the cross-Departmental, whole-of-Government social model approach.
Despite all of the work that has been done, I want to be very clear that the need for a national autism strategy is compelling. I believe that debate is over. We must now get on with passing this piece of legislation, engaging on the detail of the provisions to ensure we have the best Bill possible, and involving all of the relevant Departments and agencies. I am giving the Senators a timeline tonight; I wish to see the strategy developed in 2018. We will get on with the two pieces of work I have outlined, namely the HSE working group and the research study, while these Houses are progressing the Bill.
There is so much more to do in this area. In particular, I want to talk about the difficulty facing parents in accessing services and therapies, and the particular challenges for those children with autism who are now becoming adults with autism and our need to address educational and employment opportunities for them.We must and we will do better in this regard. Last year, we hired 83 additional speech and language therapists to work in our early intervention teams but we have come from a very low base after a number of difficult years. I give a commitment to Senators that we will continue to properly staff and resource our early intervention teams so that we can tackle what are, in certain parts of this country, significant delays in terms of people accessing therapy.
Again, I congratulate Senator Reilly for introducing this Bill. I also congratulate the Seanad, on an all-party basis and grouping basis, for accepting this Bill, which is what I expect the House will do this evening. I thank all of the advocates for their work, personal stories, testimony and tireless campaigning over many difficult years to bring us to this point. If we work together on this matter we can progress this legislation and we can have a national autism strategy in this country by next year.
I am contributing to this debate in Senator Swanick's stead. The Senator has another engagement.
I wish to extend a hearty welcome to the Minister for Health. I very much appreciate the fact that he may have to leave early and I encourage him to make the right decision in the weeks to come.
I thank Senator Reilly for bringing forward this legislation and for his enlightening and emotional contribution. Fianna Fáil fully supports the Bill. I have a speech in front of me that is full of statistics which highlight where mistakes have been made in the past not only by this Government and that which preceded it but by Governments that were in power over the past decade or so. However, I shall not use such information. In light of the legislation before us, this is a positive evening for the Seanad and I very much welcome the contribution made by Senator Reilly. I also welcome the initiatives that the Minister has outlined. I encourage him to work to a tighter timeframe than the one he outlined.
Interestingly, while researching this matter, I learned exactly what autism spectrum disorder means. The Mayo Clinic has defined the disorder as a serious neurodevelopmental disorder that impairs a child's ability to communicate and interact with others. The disorder also includes restricted repetitive behaviours, interests and activities. These issues cause significant impairment in social, occupational and other areas of functioning. In 1996, a declaration by the European Parliament stated that people with autism should have the same rights enjoyed by all EU citizens, where such be appropriate and in the best interest of the person with autism, and that these rights should be enhanced and enforced by appropriate legislation in each member state. Diagnostic services, individualised education, family support, housing, vocational training and lifelong care will all now have to be adequately addressed and appropriate services will have to be provided. The legislation before us will go a long way towards fulfilling what was sought in the declaration to which I refer.
In the context of the Bill, I commend a lady from my constituency of County Monaghan, Lisa Marie Clinton, who has received an array of awards. Most recently, she won the award for Monaghan's best start-up business in Ireland and best entrepreneur competition for her company AVAIL, or Assisted Visuals Achieving Independent Living. The company provides an e-learning app and web portal for children and adults with intellectual or development disabilities, namely, autism. With a bit of support from the local enterprise office in Monaghan, Lisa Marie has created a revolutionary tool that promotes lifelong learning and helps children with autism to live as independently as possible. It is people like Lisa Marie who need to be commended, supported and encouraged.
Again, I congratulate Senator Reilly for bringing forward his legislation and I ask that arrangements be made to take Committee Stage as a matter of urgency. I give the Senator a commitment that my party will support him in that regard.
I agree with Senator Wilson and I commend Senator Reilly on the great work that he has done in respect of this Bill. Senator Reilly has talked to me about the Bill. He has been a passionate campaigner for autism services and he has canvassed far and wide for people to support his Bill. I am delighted to be here this evening with my colleague to support Senator Reilly and move the legislation forward.
I wish to note a small matter. The Minister spoke at length about a timeframe. I know that he may need to conduct some legal checks and whatever else. Having read the Bill, I believe it is realistic and I would be surprised if it generated many hiccups. We have already heard a bombshell of news about a timeframe this evening. We would be delighted if the Minister surprised us by shortening the timeframe for the Bill.
Through my own experience with autism in Mullingar, I know that great work is being done by the Saplings school there and by Autism Ireland at its centre in Multyfarnham. Much work has been done in the general Westmeath area in terms of autism and many of it has been self-funded. There are hardworking groups in Mullingar. Saplings Limited is a great example in how to provide autism services and care for really young people. Praxis Care and a few other organisations provide care in the region and are trying to secure a larger foothold in the community. I appreciate all of their efforts. We have a reasonable base so we should be able to move autism care forward. Education is very important and I thank Senator Reilly for bringing forward very good legislation.
Sinn Féin supports the Senator Reilly's Bill, which I warmly welcome. It has been a long time coming. The Bill deals with awareness-raising, advocacy and data collection, which will be very important into the future, and it is very welcome. If the legislation is enacted, these elements and all of the others it contains will make a real difference to the lives of persons and families affected by and dealing with autism in Ireland.
I usually stand up in here and am a bit of a grouch. I do not want to sound like a grouch. I just want to point out the real and present danger that what is intended by means of this wonderful Bill will not be realised unless the Minister provides adequate resources. The austerity years devastated families that had members with disabilities because they were left alone in their struggle. When I was a member of the nursing profession, I witnessed the isolation, fear, laughter, tears, despair and emotional rollercoaster that such families experienced at that time. They had very little back-up or support from the State and what did exist was mercilessly stripped away.
In terms of therapy supports, there is an 18-month waiting list for people with disabilities to be assessed. Such a situation completely disregards the Disability Act 200, which stipulates that assessment should take place within three months. The strategy stipulates that the State "should make provision for individual assessments of persons with autism spectrum disorder." How can that be achieved without real moola being provided? Funding is needed. In the absence of additional resources, these unacceptable waiting times will continue.The current assessment of needs is being implemented adequately under the Disability Act. Those with autism already receive an assessment and access to health care. However, parents are forced to spend hundreds of euro every month on private therapy for their children due to the lack of capacity in the public health care system. As the Minister knows, we need more speech and language therapists, occupational therapists, psychologists and psychotherapists in our public health service. Many of these health care professionals were culled from the health service when it was on its knees.
What is there to disagree with in this Bill? It mentions the specialist need with regard to autism. I warmly welcome any specialist service that will be provided to people and their families. We could focus on special needs assistants, SNAs, in schools, but that is probably for another phase.
This is a day to congratulate the Senator and to commend him, the people in the Gallery, and the petition for classrooms to be opened in all primary and secondary schools in Ireland. This is also a day to urge the Department to listen to the concerns of parents and teachers alike who signed the petition. They have told me of the many roadblocks they have to go through. Those involved in a school in Walkinstown continually fund-raise for its ASD classroom, but that cannot be sustained in the medium to long term. There would be burnout. I thank Senator Reilly for his emotional presence here today which reflects everyone else's experience. Members of this House reach out to the Senator and to those in the Public Gallery who allow us to hear at first hand the long-fought battle that has tested and reduced people's financial and emotional resources. It is two people standing up for people's rights and their children's rights and their children's future. We have been forced to become a more caring, understanding and embracing society and I am proud to live in it today.
I welcome the Minister to the House. It is great that he is here for the Second Stage of this Bill. I know he has a grá for the topic.
I welcome the opportunity to speak on the Autism Spectrum Disorder Bill 2017. As has been said, it seeks a national strategy for children and adults living with autism spectrum disorders. I warmly applaud my dear friend and colleague, Senator Reilly, for spearheading this forward-thinking initiative. The Bill has been designed to ensure those affected by ASD receive the necessary resources and support they deserve throughout their lives.
Everyone with ASD is unique. It is universally acknowledged that early diagnosis and early intervention with evidence-based practices make a great difference to a child with ASD. Current waiting lists for assessment are between nine and 18 months. However, in many counties throughout the country, families have had to wait years for a diagnosis. Even if a family is lucky enough to get a diagnosis, there is often no intervention or service to follow up the diagnosis. There is no autism team in two midland counties, for example. Waiting lists for clinical psychology, speech and language therapy and occupational therapy can be up to three years. A national autism strategy would help to highlight this shortfall in appropriate support.
In this vacuum, many families have no option but to search the Internet for help. As a result, the autism community in Ireland is flooded with unproven, unregulated and often dangerous interventions such as miracle mineral supplement, MMS, which promise cures. There is a proliferation of interventions for people on the autism spectrum. However, research evidence for most of these interventions is scant at best. Applied behaviour analysis and positive behaviour support are the proven methodologies for improving the well-being and quality of life of people with ASD. The Government must ensure that staff who work with people with autism, either in education or health or both, are trained and skilled in these methodologies. It has a responsibility to publish guidelines on reputable evidence-based interventions, fund research, evaluate autism interventions and disseminate and highlight practices that are found to be effective.
Many people with ASD can achieve paid employment or third level education or both. Some people with ASD thrive in the more specialised academic environment of university. To get there usually requires an individual support plan. People may need support to develop a system of communication and support to understand social communication. It helps if these are in place from a very early age. Some require inclusive education, possibly with the help of special needs assistants. Some require an autism-specific unit attached to a mainstream school with applied behaviour analysis as a primary methodology. With the right information and guidance for families and communities, people with ASD can develop meaningful and satisfying relationships which support them to connect with others while respecting any wish for time alone.
Ordinary environments such as waiting rooms, shops and cinemas can be terrifying for many people with ASD due to the sensory bombardment and overload therein. Behavioural methodologies have been very effective in identifying individual triggers, promoting emotional regulation and protecting an individual's mental health. Visual supports such as timetables, picture sequences and choice boards are a lifeline to many people with ASD. However, these methods need to be widely disseminated. The national strategy will, I trust, highlight interventions such as these and ensure they are disseminated as widely as possible, not just to professionals but to schools, families and communities in order that Irish citizens with a diagnosis of ASD can at last reach their true potential. I commend this Bill to the Seanad and I commend Senator Reilly on bringing it to the House.
I welcome and support the Autism Spectrum Disorder Bill 2017 and commend Senator Reilly on bringing it forward. It is heartening to see so many people with autism, together with their families and supporters, in the House to urge us on.
As has been mentioned, a growing number of people are diagnosed as experiencing autism each year. The latest estimates of the Cambridge University autism research centre indicate that one in 58 children have some form of autism spectrum disorder. As Senator Reilly suggests, agreement on realistic prevalence rates of autism in Ireland, along with a standardised a national assessment process such as that envisaged by the Bill, would allow us to plan for the support of people with autism as a standard practice and policy. That is not happening now.
When I worked for the Cope Foundation, its north Lee autism spectrum disorder service was cited as a model of good practice in a HSE service improvement team report published in 2015. The north Lee ASD caseload grew from approximately 50 children in 2005 to more than 500 children in 2015. Instead of a commensurate expansion in resources from the State to cater for the increased caseload, the service experienced cutbacks. In an effort to reduce the cruel waiting times, an innovative smart assessment approach was developed which cut out duplicate reporting by the different disciplines involved. The length of time for the assessment dropped from 24 hours to 12 hours. This streamlined the assessment process and put the focus on the more important post-assessment support that people with autism need across their lifetimes to flourish.
Responding to the needs of people with autism requires lifetime and life cycle planning and a response involving all of society. The lifetime planning approach has been absent from the planning for the education of children with autism. Getting a suitable school place in primary, transitioning from primary to secondary and from secondary to training is disjointed to say the least. The mainstream population would not accept it. Why is this lack of planning and joined-up thinking visited upon children with autism, who prize certainty and often find change difficult? It creates huge, unnecessary anxiety and untold distress to them and their families.
Children and students with autism should be able to access a diverse and suitable education in a mainstream setting. The Education for Persons with Special Educational Needs Act 2004 provides that children are to be educated in an inclusive setting unless this would not be in the best interests of the child. The provision of ASD classrooms which enable people with autism to navigate school successfully are key to making mainstream education accessible. These classrooms have specially trained staff and specialist equipment which helps students with communication, sensory and motor issues.Allowing students with autism to attend mainstream education has a positive effect on the whole school, providing all students with an insight into and understanding of autism. The world is a diverse place, and our classrooms and schools should reflect that reality.
There is currently a chronic lack of ASD classrooms particularly at second level. At present schools can and often do refuse to establish an ASD classroom when requested to do so by the SENOs working for the National Council for Special Education. This results in patchy and unbalanced access to education. Some students, even in urban areas, have to travel up to 20 km to school each day because local schools simply refuse to cater for them. Many students who had access to an ASD classroom at primary school will not get one at second level because of the current gap in provision. The National Council for Special Education has expressed disappointment at the restrictive and exclusionary practices of some schools and has looked for additional powers.
In 2014 there were 13,873 students with autism in the school system, 63% of whom were in mainstream classrooms, 23% were in a special class and 14% were at a special school.
In the whole of County Cork there are 81 ASD classrooms at primary level catering for 480 students and just 41 at second level for 246 students. The Cork autism gap, the difference in places at primary and secondary in Cork, is 234 and this gap is replicated across the country. As a result some students will lose supports as they transition from primary to secondary. Others whose support needs develop at a later stage are being denied access. The need is greatest in co-ed or boys' schools as up to 80% of people with autism are male. A place in an ASD classroom can be more cost-effective than a place in a special school or supporting home schooling.
As well as introducing this Bill, I would be grateful if Senator Reilly and his Fine Gael colleagues would also lobby their other Fine Gael colleague, the Minister, Deputy Bruton, to support the amendment I proposed to the Education (Admission to Schools) Bill currently going through the Dáil, to give powers to the National Council for Special Education to instruct schools to open an ASD classroom, thus enabling children with autism to progress with their education, especially from primary to second level, without fear or anxiety, just like other children.
Also on education, there are significant issues for young people with autism or school-leavers as the group is often known. For example, in Scoil Ashlinn, a school for children with autism in Cork, two young people graduated in 2013 and ten in 2014. Despite no earmarked funding for school leavers Cope Foundation, somehow found a way to set up An Tuath Nua, a training centre offering a three-year training programme. This summer those ten young people finish the three-year training programme. I am not sure what prospects lie ahead for them or what resources are at their disposal. Most likely the ten young people and their families will not know either. This happens year-in year-out for school-leavers, including children with autism. It is simply not good enough and I welcome that Senator Reilly’s Bill seeks to address this and other issues facing people with autism.
The proposed strategy set out in the Bill is comprehensive. Autism is a big spectrum. We need to keep focus on the person with autism, their individual rights and preferences. When one has met one person with autism, one has met one person with autism.
We must avoid the mistakes of the past that were made with people with intellectual disabilities which we are currently trying to undo and unwind. People with autism can often be the ones labelled as having behaviours that challenge. All too often we witness cases of over-medication and use of medical restraints, when it fact it is the environment and not the person that is at fault.
I commend the work of Dr. David Pitonyak, a leading US thinker on autism and one I have had the privilege of listening to and working with. He says that his practice is based on a simple idea that difficult behaviours result from unmet needs. In a sense difficult behaviours are messages which can tell us important things about the person and the quality of his or her life. People with difficult behaviours are often missing meaningful relationships; a sense of safety and well-being; things to look forward to; and a sense of value and self-worth. Dr. David Pitonyak would endorse this Bill, and judge it as being on the right side of history, moving firmly away from segregationist and institutionalised responses, to a rights-based approach to people with autism.
It is important to focus on people throughout their whole lifetimes. The Bill envisages employment being key. I was really glad to read an article in the most recent edition of the Harvard Business Reviewwhich highlighted that many people with autism, dyspraxia and dyslexia have extraordinary skills including in pattern recognition, memory and maths. However, many traditional recruitment methods miss out. It is great to see companies like Hewlett Packard embrace neuro-diversity as an explicit workplace strategy.
I welcome the Bill and will help the Senator and Minister in any way I can. I am delighted to support it.
I welcome the Minister of State, Deputy Corcoran Kennedy to the House. I thank the Minister, Deputy Harris, for his remarks. I compliment Senator Reilly on his initiative not just in bringing the Bill before us tonight, but also in persevering and ensuring that we have this debate tonight. Senator Reilly, who is a good friend of mine, will forgive me for welcoming his wife Dorothy and his son Jamie to the Gallery. As the old cliché goes, behind every good man is a good woman. In this case, beside every good man is a good family. I know that Dorothy along with Jamie in their own right have been tremendous champions and advocates, on which I commend them. I do not think it is inappropriate to pay tribute to them or their work and advocacy.
The Minister spoke about a national strategy being a living document. It is about the lives of all our fellow citizens. As Senator Kelleher said, it is about being able to access educational places, supports and services, and also treating people with respect and dignity. It is important that tonight's debate is about ensuring we have a strategy that reaches out across all parts of our country. We acknowledge that there are gaps and deficits and that there is a need for investment. Tom Cruise's infamous line "Show me the money" certainly must come to fruition here.
I acknowledge that we are on a journey and we have all-party support for this Bill. In response to Senator Wilson's remarks, as Leader of the House I say we certainly will not be found wanting in bringing the Bill from Second Stage to Committee Stage. In his remarks the Minister mentioned consultation. I say to Senators Reilly and Wilson that we will not have any inordinate delay from this side or from this House in assisting this Bill in its journey across the Houses of the Oireachtas.
Others have referred to the people in the Gallery. It is important we thank the people in the Gallery, the members of all families and the people who are advocating.
My godson in the United States is on the autism spectrum. He can dismantle a car and put it back together in a couple of hours, but certain simple tasks take him forever. When I appeared on local radio with P.J. Coogan this morning I was reminded of a conversation with my godson where he said, "You know, I'm seen as being different, but I'm not." P.J. Coogan, who has a son on the autism spectrum, mentioned this morning that in the past people would be viewed as being odd, different or being cast aside. Is it not wonderful that as a society we are now becoming inclusive through education and employment and through our policies?
That is why tonight is very important. It is about putting in place a national strategy. That gives it value and puts value on Government. Today we attended the launch of Senator Marie-Louise O'Donnell's report on death and dying. It is about having a cross-departmental approach and ensuring that each person's uniqueness is celebrated and that the characteristics, values, personality and skills can be delivered to their fullest potential. As people will know from my speeches in this Chamber, I am a big fan of Maslow. We must always allow people to reach their full potential no matter who they are or where they are from. The Bill is about ensuring we value every person in our society.
Senator Kelleher and I have a shared experience of being involved with Cope Foundation in Cork. Last Thursday night I was very proud to attend the 60th anniversary to represent my father, who is a former chief executive, as was Senator Kelleher, to recognise the importance of all people. That is why I have taken heart from the Minister's remark about the need for a whole-of-government approach.It is not about the Department of Health or a single Department. It is about education in respect of an autism spectrum disorder unit or the provision of a place, whereas Senator McFadden commented on getting intervention or diagnosis and Senator Devine referenced the waiting time to be assessed. It is about a whole-of-government approach. That is why the Minister's reference to the role of the HSE is important and I welcome the setting up of a working group. However, it cannot simply be a working group that will speak to itself and go no further. It has to be able to have consequences and a follow-on. That is why it requires political leadership.
A part of me would have loved it if Senator Reilly had been a Minister when we had money in our country, because he was a man in the Department who had a vision and who was in a hurry. I really wish he had been a Minister when we had money in our country. What we are seeing today in this Bill is the future part of his legacy. As Members, we need to have political leadership to ensure that we pass the Bill through this House and on to the Dáil without delay. That is why tonight's debate is absolutely healthy and necessary.
We all accept that waiting times are excessive. We need early intervention; it is absolutely necessary. Those of us involved in the education sphere recognise the importance of early intervention. If we invest early, it prevents later difficulties and consequences in our health system that could be avoided by such early intervention. It is important that we broaden our approach in education in terms of how we can improve access. Senator McFadden referred to the issue of inclusiveness and so on. Eight themes emerged in the Minister's speech. I will not go through them all because my time is up but it is worth looking at them and what they stand for or represent. They are a focal point for us and they must be part of what guides us.
I commend Senator Reilly. I thank all Members for their contributions and support on Second Stage. I hope we can work together to ensure the Bill becomes a reality, rather than letting the thing gather dust on a shelf. It is important that we act collectively.
I welcome the proposal from the Minister for Health, Deputy Harris, to set up a working group to progress this legislation and collate data to support an autism strategy. I thank Senator Reilly and commend him on introducing this important Bill. Senator Reilly, myself, the Minister and many others in the Oireachtas have personal experiences of dealing with the often-disconnected services for family members of those with autism. Some families are at their wits' end trying to cope with the challenges that go hand in hand with the condition of autism. I have heard multiple stories from families with experience of autism with whom I have come into contact since my election last year. Theirs is often a tale of frustration and desperation as they try to get access to the various services necessary in the face of a sometimes seemingly uncaring bureaucracy.
There is a serious lack of cohesion when it comes to support, as well as a widespread lack of information of the available services. Let us consider the example of the Maher couple from County Kilkenny. The autism of their son, Michael, has led to a situation where the family have been essentially confined to their home. They have suffered extraordinary stress as they have tried to cope with an increasingly challenging situation. The Maher parents are dedicated to the well-being of their 17 year old son. Michael's father had to give up his job so he could provide the care his son needed. Thankfully, in this case, Michael's parents have managed to secure a place at a school in Waterford that can give him the support he needs. Many others I have talked to have not yet been so fortunate.
We can see the mental health effects that disconnected services create. Those suffering from autism and those providing care for them can be deeply affected by the inconsistency in the way individual cases are handled, the lack of resources in schools and the feelings of being ostracised that accompany a lack of social and community involvement. A Waterford couple I spoke to told me of the difficulties they were having in getting public access to a child psychologist. Their daughter was left on a waiting list that was going nowhere. The mother referred to the way her daughter has been treated by the system as disrespectful and as a violation of human rights. She spoke of the hypocrisy whereby families who are not in a financial position to access private psychological services may be left on public waiting lists for years while the same service provider will provide appointments within approximately two weeks if the family is in a position to fork out €900.
My eldest daughter, Emer, who is now 25, was identified at an early age as being on the autistic spectrum. She received back-up and support. She got physiotherapy and occupational and speech therapy from an early age. They have had a major impact on her development. Emer and my family received all the support we needed to ensure that she had the best possible opportunity to reach her potential. She got an excellent level of care that helped to shape her into the bubbly, popular, socially adjusted, proud and integrated young woman she is today. Here is the thing: Emer was born in the Netherlands and that was where we lived for the first years of her life. I am a proud Irishwoman but I am glad my daughter was born in the Netherlands, where we had access to a coherent and comprehensive system of services and supports.
Where appropriate and timely interventions are available, we see positive outcomes. We need a national autism strategy urgently. We need an integrated approach. Families desperately need support. Families need to be spared the challenges of begging for care and access and for the right of their loved ones with autism to find the self-realisation adverted to by the Leader, Senator Buttimer.
I sincerely thank Senator Reilly for bringing this Bill to the House. I am happy to support the Autism Spectrum Disorder Bill 2017 and I hope it passes through the House quickly.
I welcome the Minister. It is great that he is here this evening to hear the debate. I compliment my colleague, Senator Reilly, on bringing the Autism Spectrum Bill before the House.
Much has been said tonight and I will not go over some of the things that have been said. One thing I have learned from talking to family members of those on the autism spectrum is the nature of the gap between the time a person is diagnosed and the time the person receives the services. While it has been acknowledged that the delay has improved considerably, there is still a need for more improvement in access to therapy services and seeing the psychologist. This time gap is seen as being the essential window of opportunity. Certainly, it needs to be narrowed. That is one area on which I am keen to focus in. Much progress has been made but autism affects so many people. Many families have members or relations who are on the autism spectrum. Certainly, it should not be budget dependent because these children are our future and it is important to secure early diagnosis. I visited an early intervention centres recently. It is not far from where I live. I spoke to the teachers and the families affected and it was an interesting visit. I learned a great deal from it.
The Minister's announcement of an all-party approach and the committee he intends to set up within the HSE is welcome. I am keen to see parents and educators being represented as well as psychologists, those providing speech therapy services and all service providers and occupational therapists involved. It is important that the committee is broad. I welcome that there is cross-party support for this important Bill. I am spokesperson on education on behalf of Fine Gael. The lack of ASD units has been referred to by many speakers. While I welcome that there has been an increase in the number of special classes and special class places and that there are now 888 ASD units, many people have to travel long distances to access them. In some areas, there are no ASD units. I have been raising this issue with the Minister for Education and Skills, but perhaps it could be addressed by the cross-party committee when established. The committee could also address the lack of early intervention special units, of which there are currently only 126. The blueprint is good but we need to increase the resources to optimise the results. Services in the mid-west have been trying to follow international best practice and have set up child service teams which are top quality. However, as I said earlier and as mentioned by other speakers, access to these services is an issue.
I acknowledge the progress to date and the model of services provision. I welcome that we are being proactive rather than reactive and that everybody is willing to work together to deliver this important unit. At the end of the day, what we all want is quality of life not only for people with autism, but their siblings and families. While there has been a small increase in the number of speech and language therapists, I would like to see additional staff recruited because they have a huge role to play in terms of the development of these children.
Protocol requires me to address the Chair, and rightly so, but my instinct is to address the Visitors Gallery. I will do everything I can to help to progress this Bill through the Seanad. I am committed to it and I welcome it. I have no doubt that the Bill will be passed and that we will have an implementation strategy in relation to this matter, but I am not sure we will get the promise of it delivered. That is the risk. I will be happy to be 100% wrong in this regard but it is better to raise these concerns, which are based on my many years of experience dealing with disability-related strategies. This is a night of hope and I do not wish to be anything but hopeful in relation to this Bill, but we need to face up to the risks that are in our system. I do not believe that the Minister or anybody else involved in this area wishes other than to see this happen.
The Minister stated that strong collaboration and joined-up thinking will be required across a number of Departments and stakeholders to ensure the very best legislative solutions are provided. That is an issue that has dogged public services in this country since Basil Chubb wrote about it in his book almost 50 years ago. We still have, in effect, 15 different governments, as he described it. We talk about joined-up thinking but it rarely happens, which is a real concern in relation to this issue. For this to work joined-up thinking across the health services, the Department of Health and a range of other Departments is required.
Reference was made to the national disability strategy implementation plan and the comprehensive employment strategy, in regard to which I would like to set out some facts. The comprehensive employment strategy was to form part of the National Disability Strategy Implementation Plan 2013-2015. Neither the Department of Social Protection nor the Department of Jobs, Enterprise and Innovation would have anything to do with sponsoring it. It was sponsored by the Department of Justice and Equality and was not delivered until October 2015, which was three months off the ending of the three year period of the plan. The current strategy is sponsored by the Department of Justice and Equality and not the Department of Jobs, Enterprise and Innovation, the reason for which I cannot figure out. In regard to the 2013-2015 implementation plan, the commitment to put it in place was made in February 2011. It took two years to do that and it ran for three years. The follow-up implementation plan, which the Minister mentioned in his speech is soon to go to Cabinet was to commence in January 2016. We are now half way through 2017. The chair of the implementation body for the comprehensive employment strategy, Mr. Fergus Finlay, said at the end of its first year of operation: "I do not think one job will have been created." I am not happy to make these points: I hope I am wrong, but I know how difficult it is to implement these measures. My remarks are not only directed to those in the Visitors Gallery but to my colleagues.
During the strike four weeks ago by Bus Éireann, the Department of Transport, Tourism and Sport and its agent, the National Transport Authority, could not figure out that what they were doing was removing wheelchair accessible buses from three routes to make savings. Not one of the privately operated buses on those routes was wheelchair accessible, nor were they required to be so. If that can happen, then in terms of implementation in this area, we need to be very careful. Recently, Mr. Robbie Sinnott, who is blind, took the State to court so that he could do one thing that is guaranteed in our Constitution, namely, the right to vote in private. He was pushed to the limit and he eventually won his case. That is not an issue that is a huge drain on the public purse because elections and referenda are not held too often.
There are real concerns around implementation and mindset among staff in the various Departments. The Department of Justice and Equality is responsible for the provision of a focal point for the promotion and co-ordination of disability policy, including the national disability implementation plan. A whole-of-government plan must be driven by the Taoiseach of the day and co-ordinated across various Departments. The Department of Justice and Equality can do no more than ask other Departments for their input. As I said, this is a matter for the Taoiseach. Brexit is not being dealt with by any one Department. It is, in the main, being dealt with by the Taoiseach. If disability as a whole-of-government issue is to be dealt with properly then it has to be dealt with by the boss, the Taoiseach, who will be provided with updates on actions on a weekly basis. These are areas where problems can arise.
Senator Devine raised the issue of the resources with the Minister, Deputy Harris. Resources in the Department of Health is one issue, mindset is another. Resources and mindset in other Departments are equally important. This is a night of hope but we must be careful. This is not just about getting this legislation passed. The EPSEN Act 2014 came into force 13 years ago but significant parts of it have not yet been implemented. The Disability Act came into force the following year. The assessment of needs provision has not yet been triggered, except in the case of young children.A director of advocacy, a core piece of the Citizens Information Act 2007 relating to people with disabilities, has never been put in place and there are delays in implementing the Assisted Decision-Making (Capacity) Act 2015. Let us not buy a pup. We have to travel in hope and in confidence but the legislation passed is not the legislation implemented and when it involves a number of Departments it is a really tricky deal. Successive Governments have not dealt with it.
I thank Senator Reilly, whom I first met almost two decades ago on the former Eastern Regional Health Authority, when we were younger men. I am absolutely committed to do everything I can in regard to this but people need to be very careful because what happens between Departments will either kill or drive and give life to this.
First, I commend Senator Reilly on introducing this Bill and on all the work and effort he has put into it. In recent years there has been more awareness of the autistic spectrum. Years ago it was just known as "autism" and the word was associated with people who had profound communication and behavioural difficulties. I taught for many years and I thought I was teaching disruptive pupils but that was not the case. Things have moved on but it has been a slow road.
There is more awareness now, which has come about, almost accidentally, through the media. We sometimes criticise the media but some television programmes educated us on the issue. There were American and British television series where families had children on the spectrum, and through these kinds of programmes many people learned about the difficulties that people with ASD and their families face. We need to have a high-profile public awareness campaign, early screening and early intervention. We need a one-stop shop, consistency and awareness on the part of public servants, housing officials, the Garda and the public in general so they do not misinterpret the sometimes quite literal conversations and challenging behaviour of people on the spectrum.
I am pleased that this Bill has come to the Seanad this week as this is mental health awareness week and many people on the spectrum - and indeed those who care for them - have mental health issues. I have no intention of going over the provisions of this Bill section by section, but I note and welcome the stated purpose of the Bill, which is to address the inconsistency which exists across the State in respect of both the availability and type of services that are accessible to children and adults with autism spectrum disorders. We need consistency and to ensure that everyone gets the same services regardless of where they live. We need to ensure they are an entitlement and not a perk.
I will talk about my interaction as a public representative with parents of children with ASD and I am sure my colleagues have similar experiences. The first problem parents come across is school admittance. I heard from one parent who received a phone call to say her child been granted a place in junior infants class as they had a cancellation, had one place available and her child was next on the list. She told the principal she would take the place and then told her that the child had just been diagnosed with ASD and ADHD. She was immediately told that the school could not take him as it did not have the facilities and it was too late to apply to the National Council for Special Education to have them in place for the following September. She appealed to the board of management of the school but it was too late for her child for that year and it was pointed out to her that she did not have an offer in writing.
This boy had been referred to the early intervention services with the HSE and had home tuition until a place in mainstream school was found for him. However, it was all a struggle, a battle and a fight for entitlements. My secretary asked the young mother of this boy if she was in receipt of the domiciliary care allowance. She had never heard of it. She was a young, single, working mother, struggling to pay bills and rent in private rented accommodation and, despite the fact that she had been dealing with the HSE for over two years, not one person told her she would be entitled to this allowance. Eventually she got it but getting it was not easy. She did not have copies of every assessment, every doctor's appointment, every psychiatrist's report, every speech and language appointment, every occupational therapist's appointment or details of every time she had taken him to an accident and emergency department when he had injured himself or broken a limb. Even if she did have all this to hand, she certainly did not have the facilities to photocopy them. That young mum was able and articulate but still needed help to get her entitlements. There are many parents of children on the spectrum who are not as able or articulate and who perhaps have learning or intellectual difficulties themselves. I believe that every family with a diagnosis of ASD needs to be allocated an advocacy person. I believe that the Department of Social Protection needs to simplify the application process.
I want to talk about the Department of Social Protection because this is something that I know about as well from my work as a public representative. I am constantly horrified by the number of applications for domiciliary care allowance and disability allowance that are refused. I am equally horrified by how many of them are allowed on appeal. The 2015 annual report of the social welfare appeals office shows that in 2015, 313 out of 837 domiciliary care allowance appeals heard were successful. That is a huge percentage and, in effect, it means that 313 parents who should have been entitled to domiciliary care allowance for their child were turned down in the first instance and had to go through the process of an appeal before they got their entitlement. I am aware that domiciliary care allowance is not just for children on the spectrum but is for all children with a severe disability who require ongoing care and attention. The parents of all these children are concerned, worried and worn out, trying to love and care for their children to the best of their ability and who knows how many of them do not have the time, the energy or the inclination to appeal decisions. The figures show that a huge amount of those who do appeal are successful.
Of the 5,220 who appealed disability allowance refusals, 1,443 were allowed on appeal. Again, that is 1,443 people who were in the first instance entitled to the allowance but had to go through all the hoops of an appeal before they got their entitlements. I believe that this Bill, in setting out the implementation of a cross-Departmental, multi-agency autism spectrum disorder strategy, will ensure that people get their entitlements. It is hugely important that we are all more educated about the difficulties and challenges of the autistic spectrum and that those who live with the spectrum should receive easy and equal access to services. I am satisfied that my colleague, Senator Reilly, has, with the introduction of this Bill, made great progress towards this becoming a reality.
I commend my colleague, Senator Reilly, on this innovative and necessary Bill which seeks to provide for a multi-agency autism spectrum disorder strategy and to provide for related matters. On 8 May, Dóchas in Limerick city held a public meeting to which all public representatives were invited. We met parents and got an insider's view of what it is like to care for someone on the autism spectrum.Senator O'Mahony made reference to one of the features they came across, namely, the inconsistency of services depending on where one lives. In one case, a child was living in County Limerick and did not qualify for the services because he was at school in County Cork. It is extremely important that we look to integrate consistency of overall services into the strategy, be it in education, therapy or mental health.
The next feature was the whole area of primary education. Many parents felt that the level of access to services-----
The Minister of State has become very fit since taking on responsibility for public health. I thank her for being here today. She was earlier discussing childhood obesity. It reminds me that as Minister for Health, I appointed a civil servant at principal officer level to cover children, health and education in respect of that issue.
I thank all the Senators for their positive contributions. It is a reflection of what we can achieve when we co-operate. I thank the Minister, Deputy Harris, for his very positive response and the Minister of State, Deputy Corcoran Kennedy, for coming in as well. It has been a long battle. While we are by no means finished yet, this Bill can give us the tools to get there. People have pointed out that it will be difficult and asked how we are going to do it. How does one eat an elephant? By taking one bite at a time. The first bite is passing this Bill and developing the strategy. We must not let perfectionism get in the way of what is good. Then we must fight like hell to make sure the strategy is implemented and resourced. In footballing parlance, tonight we can celebrate winning a match but it is still a long way to the cup final. We will all have to stay on top of it to make sure we get there.
Over 12,500 people have signed the petition and put their own thoughts in it. There is no doubt about the necessity and frustration that people feel. One person's contribution referred to "diagnose and dump". Temple Grandin wrote a book entitled Different ...Not Less. We are all different, and so are people with autism and ASD. They are not less. They have so much to give us. My good friend, Senator Buttimer, mentioned my son, Jamie, who is in the Visitors Gallery. We were told he was mentally handicapped and not to worry. He did not go to school until he was 11. Now he is making a major contribution to research, studying stem cell research and autism. Adam Harris is also in the Visitors Gallery. He has become a leading advocate for people with autism. Also here this evening is another young man with autism, Seán Molloy. Who knows what great things Seán is going to do in the future?
There is so much that these wonderful people have to offer us. We can learn so much from them. Even if they do not become leading lights in any area, they teach us so much about ourselves. When I was Minister for Children and Youth Affairs, I often said that to give is often more rewarding than to receive. Understanding what challenges others have to face in order to get by in a way that we take for granted is equally enriching. I appreciate the Minister of State waiting and will let her go lest we lose a vote.