Dáil debates

Friday, 8 March 2013

Autism Bill 2012: Second Stage [Private Members]

 

10:30 am

Photo of Michael McCarthyMichael McCarthy (Cork South West, Labour)
Link to this: Individually | In context | Oireachtas source

I move: "That the Bill be now read a Second Time."

It is with a great sense of pride that I introduce the Autism Bill to the House. This legislation has grown close to my heart since I first began working on it almost a year ago and I have been deeply invested in it ever since.

I acknowledge the presence of a number of people in the Visitors Gallery who have autism or family members with autism. If passed into law, this Bill will have a positive impact on their lives. On behalf of my colleagues, I warmly welcome them to their national House of Parliament. I hope this will be the first of many strides we will take together as we pursue our common vision for improved autism services. I also welcome representatives from organisations such as the Irish Society for Autism. I look forward to working with the society and other stakeholders such as Shine Autism and Irish Autism Action as the process continues.

I thank the Minister for Health, Deputy James Reilly, for supporting the Bill and his positive engagement with me on it thus far. The Minister has a deep interest in this issue and he and I share similar values on it. I look forward to progressing to the next phase of the process with him and his officials.

This is an historic day for people with autism as the Bill marks our first step in making autism a national priority. I hope that it will be a springboard for many new developments in the autism field and we will look back on this day in years to come as the day a Government recognised the highly complex needs of people with autism and accepted the need to enshrine their rights in legislation to enable them to reach their full potential and lead meaningful, independent lives.

The Bill places a statutory duty on the Government to publish a national strategy within two years of its enactment. If enacted, it will ensure future Governments, regardless of their complexion or hue, will be obliged to meet the needs of people with autism spectrum disorder, ASD, and support them in order that they can reach their full potential.

My motivation for bringing forward a Private Member's Bill on autism stemmed from a multiplicity of factors. In my capacity as a Deputy for Cork South-West I have had too many meetings with parents of children and adults with autism who are frustrated with the lack of services available in the area. A sort of postcode lottery system exists in respect of access to autism services, and equity of access is not being provided. The stories of those whom I have met have struck a chord with me. Parents with autism believe they must shout louder and harder than other parents because autism has been historically misunderstood and underfunded. For this reason, autism services lag far behind those available in other areas of disability.

On further investigation into the matter, it became clear that a national approach would be required to tackle these issues head on and legislation would be the first step in addressing these problems. Another key factor has been the increased prevalence of autism diagnosis in recent decades. This trend is not unique to Ireland but is a worldwide phenomenon. It is estimated that over the past 40 years, the prevalence of autism has multiplied roughly tenfold worldwide and it is now generally accepted internationally that one in 100 people are on the autism disorder spectrum.

The stunning increase in ASD diagnosis is attributable to a number of factors, specifically changes in diagnostic criteria, better resources dedicated to autism diagnosis, increased awareness, greater parental education of the condition and better clinical management. Furthermore, the increased prevalence of the condition has coincided with a move by Governments in neighbouring countries to develop autism specific strategies and legislation in recent years. Autism legislation has been enacted in England and Northern Ireland, while the Scottish and Welsh Governments have implemented strategies which are, I understand, working well.

Today, the Irish Government is stepping into line with our neighbouring jurisdictions, such as Northern Ireland, in terms of national policy on autism by recognising that autism needs its own national strategy owing to the uniqueness and complexities of the condition and acknowledging that the current model of service delivery is unsustainable or inappropriate to meet the needs of people with autistic spectrum disorder and providing equity of access or intervention. The latter point was made in a Health Service Executive review into national autism services published in February 2012. The review found that autism services varied geographically, from patchy and ineffective in some places to robust, comprehensive and integrated in other areas. It also noted that different models and approaches to the provision of health services were evident across local health office and Health Service Executive areas. It described the current model as unsustainable and in need of a substantive Government response. This Bill is my response, as a Government back bench Deputy, and I am pleased to have the Minister's support for this initiative.

A further motivating factor influencing the need for legislation is the swelling number of people leaving Irish schools with autism and finding they are, as some experts describe it, "falling off a cliff face" in terms of accessing adequate health and education services when they become an adult. There is no transition from childhood to adulthood and the majority of adults with autism are either not served or are under-served. Put simply, they cannot, as adults, access the same services they could access as children.

Statistics and research are generally scarce in this area. The national strategy proposed in the Bill provides for the establishment of a data collection system in order that we can begin recording the incidence of autism in Ireland. A study published by the Irish and Welsh societies for autism last year established that the number of pupils with autism graduating from secondary school was set to increase substantially from 2012 onwards. The study, which surveyed secondary schools from five counties, forecast that this trend, if continued, would have considerable implications for schools and post-school providers. This was an important finding because it indicated there would be a corresponding increase in demand for support in preparing pupils with autism for leaving school and preparing the general workforce and education sectors that students with autism may enter. This would also result in increased demand for specialist training in autism for staff in post-primary schools.

One may reasonably ask the reason I have focused on autism. I propose to outline a number of reasons a specific Bill is needed to deal with the condition, before addressing the reasons we must specifically design the Bill with a focus on adults with autism. Autism is a hidden disability that is not always recognised and is still profoundly misunderstood in many quarters. Campaigners point out that it is difficult to raise awareness of autism because people with the condition do not appear to be disabled.

Autism is also different from other disabilities, in that it has been historically underfunded and, therefore, services for people with autism spectrum disorder, ASD, lag far behind those for people with other disabilities. For example, those on the autistic spectrum have lower rates of employment than people with other disabilities.

Autism is a developmental disability, not a learning disability nor a mental health condition, although it has been known to happen that people with autism may have an accompanying learning disability and-or mental health needs. Generally, however, the developmental dimension to the condition means that the service as it exists often cannot meet the autism related needs of the person. It is also a complex condition and those with more complex needs require an autism-specific service tailored to meet their needs.

As adult services are organised into separate mental health and learning disability teams, the structure tends to discriminate against adults with autism and is a leading cause of inequality, particularly for people with ASD. To use an old adage, people with autism often fall between two stools in terms of service provision.

I turn the House's attention to the Scottish model and to research carried out by its National Autistic Society as part of its "I Exist" campaign in 2008. The research found that thousands of adults with autism faced a "miserable daily reality" that left them feeling isolated and ignored, unable to access the required support, and often completely dependent on their "overburdened" families. It found that 54% of the adults questioned stated that they did not receive enough support to meet their needs and that 52% of adults had not had an assessment of their needs since the age of 18 years. The report also found that more than half of autistic adults had suffered from depression and had been bullied or harassed since the age of 18 years. Only one in eight adults with autism was in employment.

The purpose of the Bill is to provide a national autism strategy so that services can be rolled out more consistently across the State and people with autism can access services as close to their homes as possible. The system of having a postcode lottery for accessing services is wholly unfair and we must have equity of access and intervention to ensure that adults with autism reach their full potential and lead independent, meaningful lives.

Within the strategy are provisions for an autism awareness drive. This would consist of poster, media and online campaigns. In many cases of autism, earlier intervention can bring on improvements. For this reason, it is critical we raise awareness about the signs of autism, act on them and provide appropriate services as soon as possible.

The strategy also provides for a data collection system and commissioning of research so as to assess the prevalence of autism in this country and plan for future service needs more efficiently. The lack of available data on autism in Ireland is something that stakeholders repeatedly flag as being a key problem that marks it out from other conditions or disabilities. If the Government does not know exactly how many people have autism, planning services is impossible.

While the Department of Health is proposed as the primary driver of the national strategy, it is a cross-departmental strategy requiring relevant line Ministers to co-ordinate, plan and implement strategies in their own sectoral areas. For example, there is scope for the Department of the Environment, Community and Local Government to develop a macro strategy to ensure that the type of housing provided to people with ASD is commensurate with their needs and abilities. There is scope within the Department of Education and Skills to develop further strategies to provide specialised educational techniques to assist pupils with ASD that may not be available in generic educational environments. There is also scope for the Department of Jobs, Enterprise and Innovation to devise job-ready programmes for adults with ASD who may progress through the education system and wish to enter the workforce, or to encourage businesses to run special programs for hiring autistic employees who may possess certain valuable skills, such as the focus and attention to detail that are common characteristics of the condition.

The Bill is not perfect by any means. It will require some amendment, to which I am open, as doing so would only serve to enhance the final piece of work. I look forward to the process of consultation with the Minister, his officials and the stakeholders that I hope will flow from today's proceedings. This is not the end of our work. Rather, it is the beginning of an aspirational and productive route. It is the first step on the journey.

People with autism should be entitled to the same rights as every other citizen. However, the very nature of autism - its complexity, its varying degrees of severity, the historical underfunding of the sector and a profound societal misconception of the condition - necessitates special consideration in terms of health services, education, housing, social inclusion and other areas.

World Autism Awareness Day takes place on 2 April. To mark the occasion and to celebrate the organisation's 50th anniversary, the Irish Society for Autism will hold an international conference in Dublin. What a wonderful tribute it would be to the work of such organisations, to the efforts of families and carers of people with ASD the length and breadth of Ireland, and to the lives of the many thousands of Irish people with the condition if we were to support this historic Bill and send out an international message next month as we host the international conference that Ireland recognises the rights of people with autism and intends to support and accommodate them accordingly.

I am deeply proud to introduce this historic Bill in the House and I look forward to working with the Minister, Deputy Reilly, the various stakeholders and the Committee on Health and Children in ensuring the Government breaks down the barriers and disintegrates the stigma faced by people with autism. To quote Franklin D. Roosevelt: "To reach a port we must set sail." Let that journey begin here and now.

10:40 am

Photo of Seán BarrettSeán Barrett (Ceann Comhairle; Dún Laoghaire, Ceann Comhairle)
Link to this: Individually | In context | Oireachtas source

This is a Private Members' Bill. Unfortunately, an order was made yesterday setting out times of 15 minutes here and there. If we adhere strictly to that order, there will be no time for private Members. I will not take Government speaker, Opposition speaker and Government speaker during Private Members' time. This is for private Members. I will call Deputies in accordance with when they indicate to the Chair. I want to preserve that right for Members.

While the order allows for Opposition party time, it is not really an Opposition-Government situation. While the order has set out rights of Opposition parties, I ask Deputies to respect the fact that many Members wish to contribute irrespective of party. I will call them in accordance with when they indicated, not with their place on the Government or Opposition side. Although the order sets out that the next speaker is to be the Fianna Fáil spokesperson, I just wanted to make that point for the future.

Photo of Sandra McLellanSandra McLellan (Cork East, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

Deputy Ó Caoláin and I are sharing time.

Photo of Seán BarrettSeán Barrett (Ceann Comhairle; Dún Laoghaire, Ceann Comhairle)
Link to this: Individually | In context | Oireachtas source

Yes. Do Deputies understand the point that I am trying to make?

Photo of Finian McGrathFinian McGrath (Dublin North Central, Independent)
Link to this: Individually | In context | Oireachtas source

The Independents are probably being squeezed out again. Is that it?

Photo of Seán BarrettSeán Barrett (Ceann Comhairle; Dún Laoghaire, Ceann Comhairle)
Link to this: Individually | In context | Oireachtas source

My point is that we can share the time. We only have three hours.

Photo of Finian McGrathFinian McGrath (Dublin North Central, Independent)
Link to this: Individually | In context | Oireachtas source

I know it will happen.

Photo of Seán BarrettSeán Barrett (Ceann Comhairle; Dún Laoghaire, Ceann Comhairle)
Link to this: Individually | In context | Oireachtas source

I want to allow as many Deputies to speak as possible. We have managed to get 18 speakers some mornings. I do not want that approach to be destroyed.

Photo of Charlie McConalogueCharlie McConalogue (Donegal North East, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

Fianna Fáil is happy to welcome the Bill and supports the principles behind it. Putting the implementation of a national autism strategy on a legislative basis is a move that we fully endorse. I congratulate Deputy McCarthy and those who worked with him on drafting and introducing this important Bill.

Photo of Peter MathewsPeter Mathews (Dublin South, Fine Gael)
Link to this: Individually | In context | Oireachtas source

Hear, hear.

Photo of Charlie McConalogueCharlie McConalogue (Donegal North East, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

As the Deputy has pointed out, ASD is a complex and lifelong developmental condition. While some people can live relatively independent lives, others have high dependency needs and require specialist care. We endorse the sentiment that people in Ireland with autism deserve to live rewarding and fulfilling lives. The enactment of this Bill could undoubtedly be a major stepping stone in that regard.

There has been a dramatic increase in the prevalence of autism in recent years and it is now estimated that approximately 600 children are being born in Ireland each year with autism. The Minister for Health might assert that, while there has been an increased demand for assessment for autism, it is not clear whether this is due to an increased prevalence or to a greater awareness and recognition of the need for earlier intervention. As with so many other statistics, though, there are real life stories behind them and the ongoing struggle to find support and services that help with the condition.

In recent years, we have seen an increased incidence and awareness of autism not just in Ireland, but internationally. It became a high-profile issue in the education portfolio. World Autism Awareness Day is on 2 April. It was designated as such by the United Nations five years ago.

It is now broadly accepted internationally that one in 100 children has some degree of autism.

Autism is a condition that is characterised by severe problems in communication and behaviour and an inability to relate to people in a normal manner. Autism apparently occurs more frequently in males. Surveys reveal a general incidence of approximately 15 in every 10,000 children. It can be suspected as early as a few months after birth or at a few years of age. As with many mental health disorders, autism affects males approximately four times more than females. This differs between low and high functioning autism, that is, individuals with intellectual disability or without, respectively.

Those who work in the area assert that the best way forward is early intervention and autism-specific education because that will give children with autism the best potential to have a better quality of life and to participate widely. Undoubtedly, we have a way to go to achieve this and the current situation puts significant pressures on resources, yet we must set priorities. As Deputy McCarthy indicated, our near neighbours have acted before us. Wales introduced a strategy for autism in 2008. Scotland followed three years later in 2011. Also in 2011, the Autism Act (Northern Ireland) was enacted. That provided that a strategy for autism in Northern Ireland must be developed and published not less than two years after the passing of the Act. It further provided that it must be set out how the needs of persons with autism are to be addressed throughout their lives.

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 provided.

This year the Irish Society for Autism celebrate its 50th anniversary of providing services for people with autism. It will also host the Autism International Conference-The Next Generation at the start of next month in conjunction with World Autism Awareness Day.

The key role of the Autism Bill 2012 introduced by Deputy McCarthy - similar to legislation which has preceded it in neighbouring countries - is to place a statutory obligation on the Government to prepare and publish an autism strategy to meet the needs of adults with autism spectrum disorder, ASD, and to provide for a national unified standard of autism care. The Bill also proposes a clear system of accountability and scrutiny relating to ASD service provision, and states that the autism strategy shall be published not less than two years after the passing of the Act.

A national strategy would provide for a number of measures, namely, the establishment of a data collection system to record the prevalence of autism in Ireland, an autism awareness campaign, the commissioning of research to identify individuals with ASD in the population, and mapping and assessment of services for them accordingly. Other measures would include the development of a pathway of care which clearly maps services for adults with autism, the need for support structures for families and carers of adults with autism, and the need to examine how these can be developed across statutory, voluntary and independent agencies.

It is a multi-departmental strategy that puts the onus on the relevant Ministers and agencies to plan and implement a strategy which would outline how the needs of adults with autism can be met by services such as housing, employment, education and social inclusion. The primary driver, however, would be the Department of Health. Each relevant Minister would also have to provide a progress report every three years to update on the implementation of the strategy in their area.

The Bill and its provisions are confined to adults only. Deputy McCarthy has outlined that some progress has already been made in improving services for children with autism under the Disability Act, and that this particular strategy focuses on laying the foundations for adult autism services in order that children with autism have a future to move towards in terms of health services and employment.

The national review of autism services in 2012 pointed out that autistic spectrum disorders are a lifelong pervasive condition. The core deficits are present throughout life but the expression of these difficulties vary with age and with the presence of additional difficulties or disabilities. Geographically, current services can vary from robust, comprehensive and integrative to isolated, patchy and ineffective. Moreover, differing models and approaches to the provision of health services are evident across local health office, LHO, areas and service areas, SAs.

The initiative to commission a national review to identify pathways of care for individuals with autism follows the HSE national conference day in April 2008 which commemorated World Autism Awareness Day 2008. It was evident from the conference that current service delivery was hugely diverse in terms of points of access and levels of service provision nationally. Moreover, differing models and approaches to the provision of health services were evident across the local health offices and service areas. ASD is recognised as a heterogeneous group of disorders and, consequently, there are large variations in individual profiles. Service delivery must take account of both the heterogeneity within the spectrum of disorders and of the lifelong nature of the condition, and it must recognise that needs change with age. The national review made several recommendations and I urge the Minister to follow them up.

Many Members wish to contribute to the debate. That is most encouraging as it shows the importance of the issue. The level of interest from Members is heartening. I do not wish to speak for too much longer but I wish to highlight one or two further issues which must be addressed. I ask the Minister to give serious consideration to them. The first is the cuts to domiciliary care allowance that occurred last year, specifically affecting younger people with autism. At one stage last year 50% of children diagnosed as being on the autistic spectrum did not qualify for domiciliary care allowance. The Government must be aware of the difficulties involved. Families with a child on the autistic spectrum often require serious attention from parents. The domiciliary care allowance is a key payment and support for them in being able to fulfil that role.

I also urge the Minister to give specific attention to another matter, in conjunction with the Minister for Education and Skills, namely, special needs assistance and learning support and resource teachers at primary and secondary level. In September this year there will be an increase in the school-going population of approximately 10,000 at both primary and secondary level. The Minister for Education and Skills has indicated his intention to increase the number of classroom teachers employed by the State to match demand. A total of 450 new teachers will be employed at both primary and secondary level. However, the cap that has applied in recent years to special needs assistants, which is currently 10,575, and the cap of 9,950 for learning support and resource teachers will remain. The Minister has not indicated any intention to increase those posts in the same way as he is increasing the standard classroom posts. An increased influx of students into the system will result in an increased demand for special needs assistants and learning resource support teachers.

I fail to understand why the Government is not increasing those positions proportionate to the increase in student numbers in the classrooms in September. It is clear that students who are most vulnerable in terms of needing additional supports, including children who have been diagnosed as being on the autistic spectrum, need those supports. They will suffer as a result of the reduction in the education budget. If we are serious about ensuring early intervention is provided for children when they are diagnosed as needing help, then we must provide it.

If we are serious about ensuring supports are given to those with autism through youth and adulthood, which has been dealt with by Deputy McCarthy's Bill, then we should not be putting a squeeze on the hours. They should not be the subject of the financial squeeze on the education budget. They are losing hours at a time when their numbers are increasing.

Will the Minister, at Cabinet level and working with the Minister for Education and Skills, rethink the particular policy approach he has adopted this year? Those who will need the supports most will lose out as a result of the approach he is taking. We saw a case yesterday where 30 positions were withdrawn in St. Catherine's in County Wicklow and people were given one month's notice. That centre is under the umbrella of the HSE. Young people, many with autism, will lose out because of the reduction in staff. As was pointed out by Deputy McCarthy, we must ensure early intervention. It is very unfortunate that with the undoubted squeeze on the national budget and given the way the Government is approaching the education budget this year, it is those who are most in need of additional support who are not being supported.

I very much welcome this Bill and commend Deputy McCarthy on bringing it forward. We will undoubtedly need to support this strategy with resources but it is a first step. I hope the Bill is accepted, goes through the various Stages and leads to an improvement in service delivery and in the lives of people with autism.

11:00 am

Photo of Caoimhghín Ó CaoláinCaoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

I wish to share my time with Deputy McLellan.

I welcome and support this Bill and thank Deputy McCarthy for bringing it forward. The Bill is commendable in its purpose to provide for an autism strategy and to put in place a national framework for addressing the specific needs of adults with autism, a framework which needs to be coherent and dovetail with provisions for children with autism.

One of the earliest issues brought forward by the Sinn Féin group in the 2002-07 Dáil, as a Private Members' motion, was on education for children with special needs. In that, we included a call for the full implementation of the recommendations of the report on educational provision and support for persons with autism spectrum disorders and the report of the task force on autism of 2001. While some progress has been made, the provision for the education of children with special needs, including those with autism, still falls very far short of what is required. That said, the focus of this Bill is adults with autism but they all start out as children. The Bill proposes important amendments designed to include autism in the definition of disability in the Employment Equality Act 1998 and the Equal Status Act 1998.

In this regard, it is interesting to look back on a case decided on by the Equality Authority in 2007. It is very instructive in terms of attitudes to autism and the need for legislation, such as this Bill. In May 2007, the mother of a child with autism, who was a tenant of a local authority, was awarded the maximum compensation payable under the Equal Status Acts 2000 and 2004 in a disability discrimination claim. The claim was brought in respect of the mother's application under the disabled person's alteration scheme for an extension to provide additional required space for her son who has autism. The claimant was represented by the Equality Authority in taking the case against the local authority under the Equal Status Acts.

An equality officer of the Equality Tribunal ordered the local authority to proceed immediately either to build a suitable extension or rehouse the family in suitable alternative accommodation in the same locality. The local authority was ordered to pay €6,350 in compensation. The equality officer stated that she would have ordered a higher amount of compensation but she was constrained by the legislation in the amount she could order. The local authority was also ordered to draw up a formal written policy in regard to the disabled person's alteration scheme to include applicants' precise requirements, detailed guidelines and an appeal mechanism.

Mr. Niall Crowley, chief executive officer of the Equality Authority, said the ruling had major implications not just for people with autism and the disabled person's alteration scheme, but also for the mechanisms, policies and criteria used by local authorities and other decision-makers for the processing of applications made by people with disabilities and others.

The equality officer said the autistic child's specific circumstances and needs were not properly considered by the local authority, and it is not only the person's needs as a child but his or her needs as he or she progresses through life, as we all hope to do in our respective lifetimes. Staff processing the mother's application were not qualified in any respect to reach a number of stated conclusions in regard to the son's disability and they did not seek the expertise of a person suitably qualified to assist the nature of the child's disability. Recommendations of a number of qualified external professionals in favour of the complainant's application were also ignored. The staff of the local authority compared the disability of the claimant's son less favourably with physical disabilities. That is an issue which needs to be highlighted. As the young boy was autistic and registered on the autistic spectrum disorder scale and did not have a physical disability, the local authority staff viewed his needs differently, which is unacceptable. The fundamental reason for the mother's application was simply not taken on board.

Mr. Niall Crowley said that the case highlighted barriers to progress for equality. The local authority was not adequately aware of the provisions of the Equal Status Acts, something we hope this Bill will strengthen, and was found to fundamentally misinterpret the key provision on the requirement to provide special treatment or facilities for people with disabilities. He said the absence of clear and transparent policies created a context where discrimination can all too easily occur. I do not expect the Minister will be able to shed any light on it today but maybe he or Deputy McCarthy might like to see if lessons have been learned by the State and what actions have followed that case. I acknowledge I have not had the time to research that in preparing to participate in the debate on this Bill.

Sections 1 and 2 of this Bill seek to put the position of autism in the Employment Equality Act and the Equal Status Act beyond doubt and the case I just highlighted gives us an even greater reason to support this proposed legislation. It absolutely needs to be beyond doubt. Section 3 seeks an autism strategy and sets out what such a strategy should provide for, which we strongly support and urge the Government to take it on board.

This Bill comes before the House in the context of disgraceful Government cuts, even recently, to services for people with disabilities. I note that last summer Irish Autism Action joined with other groups in advocating for the rights of people with disabilities to mount a joint campaign on cuts to disability services. The immediate focus of the Irish Autism Action campaign was to highlight the lack of full-time services for school leavers. Some 650 18 year olds with intellectual disability, including autism, left mainstream and special schools last summer and by September of last year, many of them were without a service or received only a partial service in their young adult lives. All such school leavers need to get appropriate services and supports. That is their right.

Irish Autism Action points out that year-on-year, school leavers are left in this situation with no further education places. This has profound implications for the ability of young adults with autism to fulfil their potential and to lead fulfilling lives and to give to give their very worried parent or parents a great sense of the security of their futures.

This Bill is clearly designed to help rectify the problem. We need to continue to work together on this to realise our objective.

Deputy McCarthy, in his opening address, referred to circumstances north of the Border. I commend the addressing of autism by our counterparts, of all political opinions, in the Assembly in Stormont. This is an all-Ireland issue.

While the Minister will not have the information I require immediately to hand, he should note the case of the Middletown Centre for Autism, a centre for excellence. It is in County Armagh, a stone's throw from my home. The project was a state-of-the-art flagship project in the early years following the Good Friday Agreement, yet a former Administration, in the early stages of our difficult financial circumstances, withdrew funding from this side of the Border to that essential development. Governments tend to hit the most vulnerable first. The centre in Middletown has a significant role to play and I urge the Minister to revisit our relationship with our colleagues north of the Border in respect of the delivery of key services. The centre in Middletown is but one example. Perhaps the North-South Inter-Parliamentary Association might bear that in mind and pay some attention to it at some point in the future.

I cannot conclude without mentioning a young autistic man in my home town, Monaghan, who will be 18 on 30 March. His mother is experiencing very understandable anxiety as he faces the first days of young adulthood because he had a late diagnosis of autism and has had scant educational health supports. He faces a most uncertain future. I wish Aaron a very happy birthday. I appeal to the Minister for Transport, Tourism and Sport, who responded to my Topical Issue matter on Aaron's case only a fortnight ago. I thank the Ceann Comhairle for selecting the matter. I urge the Minister for Health to examine the details of the exchange. The Minister for Transport, Tourism and Sport, Deputy Varadkar, undertook to speak personally to the Minister for Health on the case, which case exemplifies so many of the circumstances that apply all over the country.

Let us light the place up blue, as we have been requested to do as a signal of our absolute commitment, on International Autism Awareness Day.

11:10 am

Photo of Sandra McLellanSandra McLellan (Cork East, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

It is estimated that one in 88 children in Ireland has some form of autism spectrum disorder and that somewhere in the region of 750,000 people have a disability of one form or another. In total, this amounts to 18.5% of the population. In numerical terms, this constitutes a significant section of society. Despite this, successive Governments have paid only scant attention to the needs and rights of intellectually, physically and differently abled adults and children. The end result is that people with a disability are more likely to be living in poverty, unemployed and dependent on State benefits. They are also more likely to be highly reliant on public services, especially in regard to health, housing and public transport. All in all, people with a disability are more likely to be excluded from society, or to be at risk of such exclusion.

Sinn Féin supports the Autism Bill 2013 but it does so in the best interest of adults with autism, their families and carers. Fianna Fáil, throughout all its years in office, and right through the so-called Celtic tiger era when it had significant financial resources at its disposal, did absolutely nothing for people with disabilities and, more specifically, people with autism. While I acknowledge Deputy Michael McCarthy's work in this area, I believe the fact that a Labour Party backbencher is now bringing a Bill before the House to make a Fine Gael Minister, with whom his party is in coalition, act with regard to autism is somewhat ironic and telling.

Moreover, the Government has not only failed to implement a national housing strategy and a comprehensive employment strategy for people with disabilities, it has also failed to ensure that all public policy measures are disability proofed. Sinn Féin is of the view that people who have autism should be automatically entitled to participate fully in all areas of Irish life. We believe that a best-practice model of service delivery, assessment, diagnosis and intervention for adults with autism, drawing on best international practice, is the way forward. We believe an integrated approach that includes statutory, voluntary and independent agencies is the only way to ensure high standards of service provision for autistic adults and their families. We also believe the State has a duty and responsibility to ensure that all necessary resources are put in place to ensure that this is the case.

In respect of all of the key indicators, namely, access to decent health care, access to education at primary, secondary and third levels, access to meaningful employment, and access to suitable and adequate housing, people with autism are discriminated against by policies enacted and not enacted by the current Government and successive Fianna Fáil-led Governments. In a mature and politically sophisticated State, adults with autism would be guaranteed the necessary services and resources required to live a life with dignity and purpose. This would mean ensuring that people with autism and their families receive, as a right, targeted supports and benefits and that the public services on which they depend are adequately resourced and of a high standard. Such supports are essential if people with autism are to be enabled to live full and autonomous lives. In other words, we need to support self-determination of people with disabilities by building their capacity and that of their families.

Sinn Féin supports this Bill. Adults with autism are human beings first and foremost. They deserve to have their rights as citizens fully vindicated. Sinn Féin will continue to speak out in favour of this and oppose all cuts to services and benefits that have a negative impact on them. I commend Deputy McCarthy on bringing the Bill before the House.

Photo of Finian McGrathFinian McGrath (Dublin North Central, Independent)
Link to this: Individually | In context | Oireachtas source

I am sharing my time with Deputy Maureen O'Sullivan. I am grateful to have the opportunity to speak on this Bill. I thank my colleague, Deputy Michael McCarthy, and commend him on bringing this legislation before the House. We have many political differences but when a Bill is sensible and bears up to independent scrutiny, we should support it. I welcome the Bill and will support it. I welcome the opportunity to discuss autism. There is an urgent need for reform and, more important, for all children and adults with autism to benefit from action on the ground and fair treatment.

As a parent of a daughter with an intellectual disability, Down's syndrome, it always gets up my nose that historically we have had to fight, protest, kick up, scream and shout to obtain services for children with disabilities. We must get away from this and the Government will have to realise that parents of all children with disabilities, in this case autism, have rights. We, too, pay our taxes and have the right to services. We must return to focusing on the rights of people with disabilities, including autism. That is my bottom line. I hope this Bill moves this process forward. Examining it, I believe it will.

I urge the Government and all Deputies to move away from the charity syndrome in regard to people with disabilities. We are talking about creating a new Ireland, a new republic, an inclusive democratic republic that respects all people, including minorities and those with disabilities. Many families say privately, but not publicly, that it gets up their noses when we talk about services with a charity mentality. I refer to the holding-out-the-box syndrome. We go to work and pay our taxes. We pay our VAT and the additional €1 in excise duty imposed recently after the budget. The latter measure brought in extra revenue. Since we pay our taxes, we should be entitled to services. Damn your charity; all we want is justice and equality. Children and adults with autism should be at the top of the political agenda for change and an inclusive society.

If the Government does not do that, and if we are not sincere, this debate today in the Dáil is more hot air.

It is really tough to be a parent of a child with an intellectual disability or any other type of disability. First, one must deal with the shock and the reality, and then, when one settles down, one must deal with the services issue. Parents do not have the time and energy to fight and protest, and the challenge in this Bill is whether those regular battles will decrease. It is important that we say so, particularly on behalf of the families of children with autism.

Many of my friends and election workers have children and adults with autism. It is extremely difficult for the families and they do not have time for getting into big rows with people and politicians and protesting outside the Dáil. They have enough in their lives to get on with. What I am saying today to the Government and to Deputy McCarthy is let us work together. If we agree on this process, which we seem to do, let us push this issue into mainstream society and let us develop services for adults, in this case those with autism. I hope and pray that as we near the end of the crisis for children with autism, something will happen on this issue as well.

Autism is a condition which is characterised by severe communication and behaviour problems. These problems result in an inability to relate to people in a socially acceptable manner. Autism seems to appear more frequently in males than in females and affects approximately 15 out of every 10,000 children. The first signs of autism are noticeable before the age of three. Often children with autism become confused about the world, which causes anxiety and results in inappropriate behaviour and tempers. As a result, children cling to routine and become attached to certain toys or objects.

We must look at the modern progression in education as well. It is important that we be supportive of the applied behavioural analysis, ABA, system. If we are talking about ensuring that adults develop under this legislation, we must set the ground work. I urge the Minister to be supportive of the ABA system. This is a system of treatment based on behaviourist theories which state that behaviours can be taught through a system of rewards and consequences. ABA is child-centred and highly individualised, starting with an assessment of an individual's skills and the development of learning objectives. By observing a person's behaviour and collecting objective data, behaviour analysts are able to monitor progress and adjust interventions on a daily basis. ABA is the only approach with substantial documented evidence of its effectiveness for learners with autism. Let us sow the seeds early on as well. We need to support these people because if one gets in early, by the time they reach the adult stage they can have made much progress.

We must be sensitive as well. There is no point in coming in here and presenting a wonderful Bill while at the same time the Government is cutting the respite care grant for parents. That is not good enough. It is also not good enough for any Member to get up here in the House and state that there must be more services for children and adults with autism. We must have them, but we must also be equally sensible and state that there is an economic downturn and a crisis here, and ask how will we fund them. I noted the Minister for Finance, Deputy Noonan, at the Select Sub-Committee on Finance, spoke about the €1 on a bottle of wine that was introduced in the budget. I remember many Members jumping up and down about it but I was not one because I thought it was a good idea. However, I was amazed at the amount of extra revenue the provision has brought in. The Minister was talking about a figure of €180 million in excise from alcohol after the budget. As the Minister, Deputy Reilly, will recall from a Government point of view, often we have come in here kicking and screaming following the withdrawal of funding of €30 million here or €20 million there. There is no reason for the Government to panic when it is looking to fund services when the Minister for Finance states he has been pleasantly surprised at some of the taxation raising measures. Let us look at those and let us not be afraid to say that as well. I raise that because many of the whingers and moaners on all sides of the House, particularly Government in this case, often ask, "Where will you get the revenue?" That is the bottom line.

The purpose of the Bill is to provide for an autism strategy to create a coherent and national framework for addressing the specific needs of adults with autism. As my colleagues mentioned earlier, similar legislation has been enacted in the North and in England.

Section 1 amends the definition of "disability" in the Employment Equality Act 1998 to include reference to autism and section 2 makes similar provision in the Equal Status Act 2000. I welcome that. Section 3 creates an obligation to produce an autism strategy while section 4 sets out a duty to implement that strategy. Sections 3 and 4 are important. It is all very well to have a strategy but one must implement it as well. Sections 3 and 4 of the Bill give it a bit of teeth.

My one concern is that while the implementation of the Bill would involve some administrative cost, the positive duties to implement the strategy are intended to be carried out within existing resources. It goes back to my point about raising revenue for services. The Government will not be able to do it within existing resources. Let us be honest about it. The Ministers for Health and Finance would tell Deputy McCarthy that as well. We must agree the legislation - there seems a very positive reception for Deputy McCarthy's Bill - but also ensure that there is the funding to back up and resource it. I want to ensure that, after the discussion here today, the families of young adults with autism have a service for life with which they will be happy. There are many examples of good practice in the health services. We all have a go at the Minister, Deputy Reilly, every now and again, but, as he will be aware, there are excellent examples of good practice in the disability sector in Ireland. We have potential there to develop services that will match the needs of the young adults with autism and also the families.

I warmly welcome the legislation. I welcome the fact that we are discussing autism and we are trying to make this a priority. I thank Deputy McCarthy for bringing the Bill before the House.

11:20 am

Photo of Maureen O'SullivanMaureen O'Sullivan (Dublin Central, Independent)
Link to this: Individually | In context | Oireachtas source

Ba mhaith liom aitheantas a thabhairt don Teachta McCarthy de réir na hoibre atá déanta aige ar an mBille an-tábhachtach agus riachtanach seo.

The words "Autism is not me. Autism is just an information processing problem that controls who I am" is a quotation from the author of the books entitled, rather interestingly, Nobody, Nowhere and Somebody, Somewhere.


Generally, we are talking about those sharing a triad of impairments that affects their ability to understand and use non-verbal and verbal communication and understand social behaviour, and their ability to interact with others. They show restricted obsessional or repetitive activities, and there is the additional dimension relating to the difficulties in processing sensory information.


Parents will have an idea by the time the child is 18 months old that something is amiss. There will be a communication or social difficulty, or a difficulty with physical contact or social interaction. It must be heartbreaking for parents and grandparents to try to pick up a toddler who does not want to be touched and who does not want to be cuddled and held, and then to see the short attention span and preference for solitary play.


In reading about autism for the debate today, I noted there is such a range of theories, ideas and suggestions, but, it appears, no gold standard for treatment. While there may be some common factors, each person with autism can display different physical, emotional, behavioural and social issues. It is not surprising that it is sometimes called pervasive developmental disorder because it has an impact on such a wide variety of abilities. I understand that very few of the range of treatments have been scientifically proven to be effective, but parents, siblings, families, teachers, therapists, etc., have positive experiences of many of these activities and treatments.


Looking at children - the Bill is about adults but, as Deputy Ó Caoláin stated, autistic adults start off as autistic children - there is no single intervention, but most individuals respond best to highly structured behavioural programmes. I want to mention some of these programmes to show the range. ABA, mentioned by Deputy Finian McGrath has had some very positive scientific results. There is floortime therapy and there is an interesting one about diet - a gluten free-casein-free diet. We know about speech therapy and occupational therapy, and sensory integration therapy. There is verbal behavioural intervention.

There is also the school-based TEAACH method which focuses on the design of the physical environment, and the social and communicating environment. The environment is structured to accommodate the autistic child and because children with autism are often visual learners, it is important to bring in visual clarity.

This brings me to PECS, which uses picture cards and encourages the expression of feelings through non-verbal activity. Relationship development intervention, which is parent based, is a programme to be implemented into regular daily activities. SCERTS promotes child-initiated communication and involves all the players - peers, parents, etc. What projects and treatments have found about the use of classical music has been very interesting. A wide range of treatments and ideas are available. The last thing parents want is to have to spend precious time battling authorities in order to access some of these treatments because what might work for one child might not necessarily be of maximum benefit for another child. I refer to the ChildVision project in Deputy Finian McGrath's constituency in what was formerly St. Joseph's School for the Visually Impaired. It has an excellent multi-disability visual impairment unit.

Regarding the adult situation, I came across a research project in England which found that 61% of adults with autism rely on families for financial support; 40% live at home with their parents; only 15% are in full-time employment; 75% either do not have friends or find it hard to make friends; and 50% have been bullied or harassed as adults. This group of adults with autism has produced a self-advocacy booklet. There is a need to support people with autism as they move into adulthood and into older and middle age, because the first cohort of people who were diagnosed with autism as children are now at that particular age.

I welcome the Bill and particularly the legislative and equality aspect; the cross-party and cross-departmental strategy including families and carers; the implementation; the reports - I think they should be more frequent than every three years; the autism awareness campaign; and the accountability of the services. I have just come from an International Women's Day event in the SAOL project in my constituency where I met a lady who claims to have "put the camp into campaign". She set out with her tent many years ago to protest at the Department in order to get educational services for her autistic child and she succeeded. That young man is now 31, living at home with a range of needs. People with disability should not be politicised and there should be general cross-party agreement on it. They are most vulnerable people and need the services that people without a disability can access.

11:30 am

Photo of James ReillyJames Reilly (Minister, Department of Health; Dublin North, Fine Gael)
Link to this: Individually | In context | Oireachtas source

I am very pleased that Deputy McCarthy has introduced this Bill, which provides for the preparation of an autism strategy and national framework for addressing the specific needs of adults with autism. I look forward to working with the Deputy to bring the Bill forward to Committee Stage. While the needs of people with autism has received some recognition in recent years, it needs a more enlightened and educated public debate, and the Bill contributes to that debate. It is also timely to confirm to the House the extent of the Government's commitment to people with disabilities, including autism.

As someone with intimate personal knowledge of this, I wish to say that autism, once diagnosed, really becomes an issue of education, as there is little by way of medicine to address the learning and communication difficulties that arise. I accept the broad thrust of the Bill and welcome the opportunity to acknowledge the importance of having a clear strategy for the provision of services and supports which focuses on the needs of the individual. Many aspects of the Bill resonate with me as being key to the delivery of a coherent and effective response to the needs of people with autism, including the cross-departmental approach to service planning, delivery, monitoring and implementation. I have appointed for the first time a principal officer to oversee co-ordination between the Departments of Health, Education and Skills, and Children and Youth Affairs in the area. We have allocated additional funding to services for autism.

I cannot predict the outcome of any consultations I might have and the legal advices I will have to seek on this matter. It may be that the Bill will require significant amendment on Committee Stage to ensure that the proposals are workable in practice. However, if that is the case at least we will be in a position to make those amendments from a basis of knowledge. By opening up the debate today we will re-invigorate thinking on the needs of people with autism by giving the specific needs of this cohort an airing and spotlight.

Before I turn to the specifics of the Bill, I reiterate the Government's commitment to the disability services programme, which this year will receive funding of €1.5 billion through the HSE. As outlined in the programme for Government, we are committed to ensuring that "the quality of life of people with disabilities is enhanced and that resources reach the people who need them". The Government is committed to protecting front-line services for people with disabilities to the greatest possible extent and is working to ensure that protection is afforded to the disability sector and the social care area as a whole.

Within the funding provided, I have emphasised to the HSE that it must maximise the provision of services within available resources and maintain a consistent level of service to that provided in 2012. In spite of the strains on the public finances with which we are all only too familiar, the HSE national service plan for 2013 includes an additional €4 million to provide training places and day services for school-leavers with disabilities, which of course includes school-leavers with autism. In terms of capital commitments, a major redevelopment project has been announced for the National Rehabilitation Hospital in Dún Laoghaire and a number of other capital projects are under way which will provide for the needs of people with disabilities including developments in Ballinasloe and Fethard.

Sections 1 and 2 of the Bill propose the amendment of the Employment Equality Act and Equal Status Act respectively. Having given the matter some consideration, I feel there is a necessity for further discussion on the need for amendment of the definition of disability under either of these Acts, as autism is already contemplated within the overall definitions at issue.

It is clear from decisions issued by the Equality Tribunal that the prohibition of discrimination on the ground of disability already extends to individuals who have autism. Complaints of discrimination recently decided by the tribunal have been brought by persons with autism who have communications and social skills problems or difficulties in socialising. In none of these decisions has there been any difficulty in the tribunal accepting that the person concerned has a disability within the meaning of equality legislation. Persons with autism, their families and carers can be reassured on this point. The Equality Authority has an important role in providing information and assistance to persons who feel they have suffered discrimination and I encourage those affected to avail of this resource.

I am particularly pleased that the Bill seeks that an emphasis be placed on meeting the needs of families and carers by requiring a clear directive towards the development of family support services. The needs of families are often overlooked in terms of service development, yet families are central to the effective delivery of services and supports to people with autism, just as they are central to the lives of their family members, regardless of whether they have special needs. Autism was one of the subjects under discussion at the informal meeting of health Ministers earlier this week. I reiterate here what I said there. Professional services may have an expertise in a particular illness or condition, but nobody is more expert on the child than the parent and parents need to be listened to.

I wish to outline the Government's policy on disability services generally, which is to advocate a mainstreaming approach to the provision of services and supports, whereby people with disabilities have access to the same services as the general population, and in addition receive the appropriate supports and interventions to address individual needs. This is embodied in the national disability strategy, which is the Government's overarching policy on the most effective combination of legislation, policies, institutional arrangements and services to support and reinforce equal participation for all people with disabilities, including those with autism. Consideration of this Bill will need to be undertaken within the context of the national disability strategy and the existing Disability Act 2005.

It is a pillar of Government policy that people with disabilities should be empowered by policy and programmes to participate meaningfully as citizens in Irish society. The national disability strategy is driven by this basic but fundamental objective.

My colleague, the Minister of State, Deputy Kathleen Lynch, is doing Trojan work in revitalising the strategy. The new implementation group, which is chaired by her, is drawing up implementable actions across a range of Departments. These actions, when finalised, will be across all areas of concern to people with disabilities in their daily lives not only in terms of the extensive supports and services which are provided by the health sector, but in the areas of access and housing, transport, training, employment opportunities and other areas.

The disability forum, convened under the national disability strategy, was vital in informing the implementation group of the needs and preferences of people with disabilities, their carers and family members. The first meeting of the forum in June of last year was attended by more than 300 people. The views expressed at that forum will be reflected in the implementation plan for the national disability strategy. I am confident that the strategy will be significantly re-energised and re-focussed under the guidance of the Minister of State, Deputy Lynch.

Deputy McCarthy is on the record as saying that a national strategy would not only transform services, but would also change attitudes across our society, build public and professional awareness and reduce the social exclusion that people with autism too often face. I echo that sentiment, which is also at the core of the national disability strategy. I hope to see significant progress on a fundamental attitudinal change in how society views people with autism and other disabilities over the lifetime of the national disability strategy’s implementation plan.

Cross-sectoral collaboration is an important element of Deputy McCarthy’s Bill, one on which I place great emphasis. Responsibility for the provision of services to children with disabilities, including those with autism, spans the Departments of Health, Education and Skills and Children and Youth Affairs. It is vital that these Departments co-operate on a regular basis with a view to ensuring their services are as integrated as possible and are targeted to the areas of greatest need. A dedicated cross-sectoral team, comprising representatives of these three Departments and the Health Service Executive, plays a key role in this regard. In addition, I have established a unit in my Department, led by a principal officer, to address the particular needs of children, adolescents and young people with complex disabilities. This new unit is charged with fostering greater collaboration between the Departments of Health, Education and Skills and Children and Youth Affairs on children’s disability issues, including autism, and to build on the cross-sectoral working arrangements that are already in place.

I have a lengthy speech but I propose, as I have only six minutes remaining, to dispense with it. I would like to clarify a few issues. Autism spectrum disorder is exactly that, a spectrum. Autism is often so mild, it is not diagnosed until children are in their late teens or become adults or so severe there are very little options but for the person concerned to remain in care. What parents want is reassurance that their child will get the right service at the right time. In the past, without a diagnosis one could not get a service. The Department and Minister of State, Deputy Lynch - I support them - are seeking to ensure that services are in place to meet children's needs. Arising out of that service should come a diagnosis which will allow for further tailoring of the service required. This Bill relates in the main to adults with autism. The adult with autism will be in a finer place if he or she receives early intervention.

I would like now to address a number of points made, which were important. On resource teachers and SNA posts, the National Council for Special Education, NCSE, will shortly provide policy advice on the model for allocation to best meet the needs of children with specific educational needs. On Middletown, the Department of Education and Skills and its Northern Ireland counterpart recently agreed a development plan for Middletown, which will see the extension of services North and South. A budget for Middletown has been agreed to enable its implementation. On St. Catherine's, funding has not been cut by the HSE. However, there are governance and financial issues requiring to be resolved. The HSE and Department of Education and Skills, which provides the funding, meets on a weekly basis with management on these issues.

Many sections of this Bill will require considerable amendment on Committee Stage. I welcome the opportunity to address this issue. As many Members know, I have a personal concern in this regard. I believe what all parents want, whether or not they have a child with a disability, is to ensure their child reaches his or her full potential. This is what is best for the child and society. I want to ensure the availability of early diagnosis services so that people are not denied a service because they do not have a diagnosis. On the issue of disability generally, while historically we have allowed many fine organisations to build up services, in more recent years a child who did not fit within their diagnostic range did not get a service. We want to change that and to individualise budgets, whether to parents on behalf of a child with autism or to adults with autism or other disabilities so that they have control and can get what they need rather than have dictated to them what is available. This represents a real challenge for some of our NGOs but it is a further extension of the money follows the patient policy and of giving people with disabilities, including autism, the right to choose and determine what best suits them and their situations.

I thank Deputy McCarthy for introducing this Bill. I also thank all Deputies who contributed to the debate for their support and attention. I commend the Bill to the House.

11:40 am

Photo of Joanna TuffyJoanna Tuffy (Dublin Mid West, Labour)
Link to this: Individually | In context | Oireachtas source

While Members are permitted to speak for 15 minutes, given the amount of time left and the number of speakers who have indicated there is on average only 10 minutes available to each of them.

Photo of Robert DowdsRobert Dowds (Dublin Mid West, Labour)
Link to this: Individually | In context | Oireachtas source

Ba mhaith liom buíochas a ghabháil leis an Teachta McCarthy mar gheall ar an mBille seo a thabhairt isteach. Is maith an rud é go bhfuil sé ar urlár an Tí inniu. I know that the Minister, who has an understanding of this particular matter, will be keen to progress this Bill as rapidly as possible. Debate on this legislation thus far has focused on disability. As stated by the Minister, as in the case of any disability, the autism spectrum is huge. While I am physically disabled, my disability is minuscule as compared with the physical disabilities of other persons. Disability ranges from my type of disability to that of a student I once taught who could not speak, not because she did not have the ability to do so, but because she could not form words. As with all disability, we must recognise spectrum.

There are many people with mild autism, such as Asperger's syndrome, who have been successful in life and have contributed much to society. It is believed that a former Taoiseach of this country, Éamon de Valera, was mildly autistic. I understand one of the reasons such people are successful is because their condition allows them to focus on what they want to do. It is important to recognise that among those on the autistic spectrum there are many talents. I hope that as a result of the enactment of this legislation more such talents will be released. I know a person who is severely autistic but is talented in mathematics. It is important this type of talent is released.

It is good that Deputy McCarthy's Bill focuses on adults. I worked in the area of physical disability and I am very conscious that in many respects services for people with disabilities are much better for children than they are for adults. It is particularly appropriate that there is a focus on services for adults. As Deputy McCarthy stated, sometimes people can fall off a cliff after they emerge from the school system. It is very important this does not happen for the individuals and their families. People can be in extremely difficult circumstances and it is very hard for people to appreciate it. An autistic person I know is a student in Queen's University Belfast. Every so often he falls out of communication with his parents and one of them must go to Belfast to see if he is okay. It does not occur to him to make a telephone call to tell his parents everything is okay. The focus on adults is good and I welcome it. When it comes to medical and other services for people with disabilities, I appeal for more focus on the needs of adults than we have had in the past. This is not to say there should not be a focus on children because, of course, there should; we must focus on the children before they become adults.

The Minister and Deputy McConalogue have mentioned special needs assistants, SNAs. I worked very closely with SNAs and have huge respect for the work they do in the school in which I worked. We need to focus more on the role of SNAs. The Department and the National Council for Special Education, NCSE, have a mindset which sees SNAs as being people who tie shoelaces or help in a physical way. In reality SNAs are used in a more encompassing way to help a child. They are under the direction of a teacher, and the active involvement of an SNA depends on the level of disability. I spoke to a teacher of autistic children several days ago and this also applies in the area of autism. We must change how we see things, and the Minister mentioned this with regard to people being excluded because they do not fit exactly into a service area. It is important we try to have a more flexible frame of mind. I strongly support the Bill.

11:50 am

Photo of Joanna TuffyJoanna Tuffy (Dublin Mid West, Labour)
Link to this: Individually | In context | Oireachtas source

I call Deputy Harris who is sharing his time with Deputy Connaughton. They have no more than 15 minutes between them and preferably they will take less time.

Photo of Simon HarrisSimon Harris (Wicklow, Fine Gael)
Link to this: Individually | In context | Oireachtas source

I will try to take less time. I sincerely thank and commend Deputy Michael McCarthy on the Bill he has presented before the House. The Bill will mean so much to many families, mine included, living with conditions on the autistic spectrum. It sends a very powerful message that the House is dedicating a Friday sitting to this issue, where speakers from all parties and none have taken a common approach to it. I agree with Deputy Maureen O'Sullivan that we should try to keep politics out of this and look at what we can do together with regard to the structures and reforms required.

As other speakers have stated, the range of needs of people on the autistic spectrum are vast, complex and changing. No two people on the autistic spectrum have identical sets of needs, which is what makes it so difficult for bureaucracies to deal with the challenge. One of the biggest problems about which my sibling who lives with Asperger's syndrome has spoken about, to me and publicly, is ignorance. He speaks about how somebody speaks to him, to use his words, "like a normal human being", until they find out he has a special needs and all of a sudden, again to use his words, they speak to him "as though he is E.T.". This is the type of ignorance we need to break down. This individual, like so many on the autistic spectrum, is superbly intelligent and able, but looks at the world in a different way and processes things in a different way but has a major contribution to make to society.

The issue is not exclusively about funding. Funding is obviously an issue and there is a need to provide supports, but when my relative was born with a condition on the autistic spectrum and when I established an autism support group in my county, the country had more money than sense. In fairness to previous Governments, money was provided and a great deal of money was invested in disability services, but all too often the money did not go where it needed to because there was no strategy specific to autism, and I presume this is why Deputy McCarthy has brought the Bill to the House. Money was being thrown around like confetti but we were not examining where the money was going. I welcome the idea of a strategy.

Deputy Ó Caoláin stated that an adult with autism begins as a child with autism and early intervention is key. We need to examine a range of issues and data collection is very important. I am pleased to hear the issue of autism was discussed at the informal Ministers' meeting at EU level, because we need to examine it. There is no reason we cannot collect data on autism in the next census. It should have been done in the previous census but deadlines were missed. We should set it as a priority for the next census. We cannot provide resources or put structures in place until we identify and quantify the needs.

I very much welcome the fact that the Minister for Education and Skills has asked the NCSE to conduct a review of special needs education policy. I believe this is the first time the policy will be reviewed since 1993. It is long overdue. I hope when the NCSE reports we can have a debate on its recommendations in the House.

We have a significant problem with diagnosis and assessment. We hear the word "cap" very often when farming is being discussed, but another cap causing problems at present is the cap on the number of National Educational Psychological Service, NEPS, psychological assessments for which a school can apply. This means a teacher must choose one student over another who they feel have special needs to apply for a diagnosis. It is placing school principals in impossible situations and it needs to be addressed.

Deputy Dowds summed up perfectly the issue of SNAs. We keep speaking about how we divide the pie and how much of the pie is distributed, but we need a new pie. The criteria for special needs assistants are care based and this is very important, but many people with conditions on the autistic spectrum do not have care-based needs. They need a teaching assistant. They need someone to be able to sit there and help them organise their day, write down their homework and keep focused. This is what they need. They do not need assistance going to the bathroom. The criteria for and job description of an SNA, which includes photocopying and tidying the classroom, are out of date, out of sync with best international practice and need to be revised.

The HSE and other public bodies need to provide more training for staff, including nurses, doctors and clinicians, with regard to autism and how to interact with people to whom they provide home help who have autism. The domiciliary care allowance is very difficult to apply for when one has a hidden disability. We must examine the application process. I commend the Minister for Social Protection on the review group she has put in place, and the fact she has involved groups such as the Special Needs Parents Association.

The Office of the Ombudsman for Children was established before a number of other organisations and, therefore, the Ombudsman for Children has no remit to examine issues relating to the National Council for Special Education. The legislation needs to be updated.

We must examine the issue of ABA and I feel quite strongly about this. My party and the other party in government have very strong views on ABA. I do not wish to speak for anyone else, but other parties in opposition also have very strong views on ABA. However, it seems that whoever is appointed the Minister for Education and Skills, regardless of party affiliation and what Government he or she is in, he or she goes into the Department and comes out with a different view on ABA. This simply cannot be the case. We cannot know ABA works one day and then become the Minister and all of a sudden have a problem with ABA. We must have a serious conversation about ABA and the contribution it has to play. It is not for everybody but it does have a role.

With regard to the transition at the age of 18 from educational services to other services, I welcome the Minister's comments on funding and the HSE service plan. This is vital. It is also vital that we start the transition and planning process at a much earlier age and do not wait until the clock is running down and there is a small window of time before an individual needs to leave a service. We should consider this one, two or three years in advance.

The issue of school exams is not an easy one to solve.

Many children, particularly on the high-functioning end - for want of a better phrase - of the autistic spectrum are extremely intelligent. They are so intelligent that they may sit a history examination with five questions on the paper. The first question, for 50 marks, might be about the causes of the Second World War. They know everything about the war so they spend the whole time writing about it and can only get 50 marks. Our exam system is extremely rigid for some of these gifted and intelligent children and young adults, so we need to re-examine that matter.

I also wish to raise the issue of parental support. Both through my autism charity in Wicklow and in my role as a Deputy many parents have told me that they have been given the diagnosis and the label, and off they go. There is a need to break down the social isolation that families, including siblings, of people on the autistic spectrum live with. While it is a broader area, a strategy is required to examine it.

I commend Deputy McCarthy and thank the Minister for his proactive and constructive response to the debate today.

12:00 pm

Photo of Paul ConnaughtonPaul Connaughton (Galway East, Fine Gael)
Link to this: Individually | In context | Oireachtas source

I am glad of the opportunity to speak on this Bill. I will keep my comments brief as a number of Deputies wish to contribute.

I commend Deputy McCarthy on bringing this Bill before the House. Many of the relevant issues have already been discussed and I agree with what Deputy Harris has said. I wish to make one key point, however. Some parents have approached me who are concerned about their children aged two, three or four years of age, although those children have not been diagnosed with autism or Asperger's syndrome. Much of today's debate has been about where children are found on the spectrum but I am referring to the stage before that occurs. Parents are seeking services for a way to diagnose their children. In many cases these parents are spending a lot of money travelling throughout the country to meet with various doctors and organisations to find out what can be done for their children. Even at this point, however, they do not know whether their children may have such a condition.

I commend the Bill, which is welcome because we do need a national strategy. However far this legislation goes, it is important to establish a diagnostic system for children from an early age because parents do not know where they will send their children to school. Will it be a primary school or one for special education? They want to ensure that their children are not stigmatised from the day they enter junior infants' class.

We must do whatever we can to help those families early on, including raising concerns with the HSE or the relevant Department. If they have concerns about their sons or daughters, they must receive the required support. We have been discussing the situation further down the education route, which is extremely important, because we should all be concerned about the supports they receive when they enter the school programme. In addition, however, that early emphasis needs to be properly understood so that parents can be given the required diagnosis.

There are many different elements in the autism spectrum and young people can fall between the cracks. Coming from a youth-work background myself, I know that if this matter is not tackled when children are aged between four and seven, it will be too late to do so further on. Many other social issues will have arisen in the interim that will disqualify these young people from the services they need.

When such children turn 18 years of age we seem to treat them as different people. Someone with an intellectual disability has that disability whether they are aged 17 or 18. Deputy Harris has done much work on this matter concerning school-leavers. When we get to that point in the year, we have this conversation about where school-leavers will go next. I find that remarkable, considering that we have known for years that these young people will need such services and facilities.

Through the strategy for autism, we must set out a plan from a very early age to show how the State will take care of such boys and girls. We should not arrive at a situation where at the age of 18, for some reason, we consider that they are different people with different needs. They have required such services for a long time and we have known of those concerns, as have the health services. It is important therefore that we lay out a plan to provide them.

Photo of Michael McNamaraMichael McNamara (Clare, Labour)
Link to this: Individually | In context | Oireachtas source

Ba mhaith liom comhghairdeas a ghabháil leis an Teachta McCarthy as ucht an Bille Uathachais 2012 a thabhairt os ár gcomhair. Aontaím leis an mbéim a chur urlabhraithe an Fhreasúra ar idirghabháil luath, nó early intervention. Cháin an Teachta McLellan an t-iar-Rialtas Fhianna Fáil as an méid a dhein siad, nó nár dhein, chun cabhrú le daoine faoi mhíchumas - go háirithe daltaí faoi mhíchumas. Chun an fhírinne a rá, afách, thóg an Rialtas sin ionaid uathachais - ASD units - in Áth Leathan in iarthar an Chláir, i gCill Rois agus in Eidhneach i dtuaisceart an Chláir.


In fairness to the previous government, they also had an ASD unit built in Broadford to serve the pupils of east Clare. What was clearly lacking for children with autism, however, was a unit in west Clare. There were units in Inagh and Kilrush, but once children left primary school they had to travel to Ennis to receive an education commensurate to their needs. In many instances, that involved a 70-mile round trip by taxi. I am pleased to say that the lack of such services for west Clare is being addressed by the Government with the construction of a specific ASD unit in Spanish Point. That will facilitate pupils from across west Clare to complement what was already in place at the time of the last election. Expenditure to the tune of €240,000 was initially sanctioned for it and that amount has now been increased to €500,000. I appreciate that might not be fully sufficient, given the need to ensure that a unit is state-of-the-art. In addition, it must be fully integrated so that we do not have a ghettoisation of children with autism within a secondary school They should be able to participate as fully as possible in a school community.


Notwithstanding what Opposition Members have claimed, there is no difference of approach between the two parties in Government on this issue. The Minister, Deputy Quinn, happens to hold the education portfolio and in that regard advances are being made to provide facilities and services for children with autism. The Minister is requesting that the services available to special needs children be re-examined for the first time in a considerable period.


Having addressed the needs of children, we now need to ensure that when they come through our primary and secondary schools, and the ASD units, they will not fall off the cliff. This Bill is about ensuring the provision of services which will continue into adulthood and that a strategy is developed to provide for that.


In particular, I commend section 3(1)(b) which states: "[T]he strategy shall outline how the needs of adults with autism can be met by service providers in terms of accessibility to services, employment and social inclusion;". Deputy Finian McGrath referred to the charity syndrome which seems to pervade much of the Irish social system. The solution up to now - not by the last government, but by governments over the years - has been to throw money at a problem and the more money one can throw at it, the more one can salve one's conscience. In reality, however, the State was doing nothing and was not empowering such people. We must move away from throwing money at the problem because we do not have the financial wherewithal to do so. However, we can concentrate on empowering people and bringing about strategies so that State agencies are geared to vindicating people's rights to participate in the workforce, for their children to receive an education, and for the right to lead a meaningful life as a member of a community.


A long time ago, we moved away from hospitalising and institutionalising people, albeit not nearly as quickly as we should have done. Now people are no longer institutionalised but neither are they being facilitated to participate fully in society. Therefore we need to take the next step, which is what the Bill is about. It concerns the strategies that will arise from the legislation and for that reason I warmly congratulate Deputy McCarthy. I welcome the Minister's response and commend the Bill to the House.

12:10 pm

Photo of Kevin HumphreysKevin Humphreys (Dublin South East, Labour)
Link to this: Individually | In context | Oireachtas source

While I had planned a contribution, I will not repeat points mentioned previously. First, I compliment Deputy McCarthy on introducing this timely and worthy Bill and I will concentrate on just one or two elements. Deputy McCarthy mentioned the postcode lottery and people sometimes think this is about the difference between Dublin and Cork or between Donegal and Limerick. However, as far as provision of services in Dublin is concerned, the post code lottery is about the width of the canal. Rather than waiting for the strategy or for this Bill to pass, this is an issue on which Members can start to work now. I certainly encountered one family that lived in the inner city but which was unable to move across the canal because they would have lost the services to their autistic son. Although they had a good support service, they could not take a home that was suitable for their needs because were they to move across the canal, the service would change and they simply could not do that. This issue must be dealt with now.

The OECD has highlighted the importance of data collection as far as the provision of health services is concerned. Moreover, data collection does not simply refer to the census figures as if one drills down, every general practitioner has an enormous amount of data available. The data protection measures must be negotiated in order to use those data to plan proper services both for people with autism and for other health needs and services and Members must move on this issue quickly. Earlier, the current economic position was mentioned but the importance of this Bill is that Members will start to plan for the future and for the society they wish to see when the nation emerges from this recession. Over the summer, I read the biography of Herbert Morrison, who was a member of the British war Cabinet during the Second World War. During the very darkest days of the battle for Britain, as the bombs were raining down, Morrison set up a committee drawn from members of the Labour Party to plan for the society they wished to see after the war was over. It was a very brave decision at the time because it was not quite clear whether England would come through the war victorious, as this was before the Americans entered the conflict. This society is going through something similar at present. It is going through what probably is the biggest recession it has ever seen and the lack of finances and difficulties in supporting the services currently available are evident. However, the change will happen and the turn will come. This is the reason I consider this Bill to be so important and this is the reason it has been brought forward now. This is the very time when Members should plan for recovery. The purpose of Deputy McCarthy's Bill is to plan for the services and the society Members wish to see. It does not advocate throwing money at the problem but concerns planning, support and services because every parent one meets who has a child with a disability or with autism worries about the time when he or she no longer will be around. Such parents worry about strategy and supports and how their children will continue to function after they have passed away. This is the reason the long-term thought and consideration Deputy McCarthy has put into this Bill has been so important.

I also thank the Minister for his contribution. While he indicated there may be difficulties in legislation and in discussions with the Attorney General, I certainly believe the Minister is highly supportive of the Bill. When this Act is passed, it will be necessary to work to keep to the two-year timeline of bringing forward that strategy. In many ways, the small signs of growth and change in the economy will be timely, in that it may be possible to implement this Act as recovery returns to Ireland and that Members can plan the services for those who definitely need them. I will conclude by complimenting Deputy McCarthy again on his work and on the form of the debate that has taken place. Too often, one finds that Fianna Fáil wants to kick the Government, Sinn Féin wants to kick Fianna Fáil and the Government and the Government wants to kick both of them.

Photo of Bernard DurkanBernard Durkan (Kildare North, Fine Gael)
Link to this: Individually | In context | Oireachtas source

That could be arranged soon.

Photo of Kevin HumphreysKevin Humphreys (Dublin South East, Labour)
Link to this: Individually | In context | Oireachtas source

On a Friday sitting, Members must get away from this practice and I commend the Minister's contribution this morning because he did not try to kick anyone. He recognised there is a real problem for which there must be real solutions. I believe this Bill comprises part of the real solution.

Photo of John LyonsJohn Lyons (Dublin North West, Labour)
Link to this: Individually | In context | Oireachtas source

First, on behalf of my Labour Party colleagues, I compliment Deputy McCarthy on bringing forward this Bill. Second, without blowing his own trumpet, the Minister brought a sense of real-life experience to this debate. For anyone listening, it is safe to state that the common dominator between everyone present, be they in the Gallery or in the Chamber or watching at home, is they all can relate to such life experience, which can help one to understand and further one's ideas and concepts towards something different. At the outset, I will speak on the concept of disability. I worked as a teacher for 14 years before entering the Dáil and about halfway through my career, I returned to pursue postgraduate studies on special education. Ironically, I was not able to undertake such postgraduate studies until I had experience of working in the field of special education but I got there in the end. The training I received while pursuing the aforementioned studies helped me to become a better teacher full stop. It opened my eyes to things and experiences that were in front of me but which I simply could not see without that little bit of additional knowledge. One such item was an understanding of autism. Having spent a fair amount of time on the autistic spectrum disorder in the course of my postgraduate studies, I remember distinctly the characteristics of Asperger's syndrome being described to me one day in college. As the characteristics were being displayed on an overhead projector, the penny dropped that I had a 16 year old student in one of my fifth year classes who pretty much had every single characteristic on display. However, it had not been noted as no one had identified him. It was a life-changing experience for me because I was able to see this person in a way that lots of other people did not. I was able in some way to facilitate his life into my life and allow learning to happen because that is what my role was in school.

On the concept of disability, society's understanding of disability has changed over the years and it still needs to change a little more. One can go back to the story of Christy Brown as portrayed in the film "My Left Foot", to which everyone can relate. There was a scene in which Christy Brown and his mother, father and all the kids were sitting in the kitchen. Christy was on the floor and until this point, his father had only perceived him as a son who really could do nothing. He perceived him as being someone who was completely disabled, who could not engage with life and could not speak, write or do anything for himself. People will remember how the moment came when Christy picked up a piece of chalk and began to write what his father initially thought was just a triangle. While his father dismissed it as being only a triangle, Christy's mother turned around and told him to leave Christy to work for a while, upon which Christy wrote the word, "Mam". All of a sudden, Christy Brown's father had a life-changing experience in which he perceived his son as being something beyond his previous perceptions. He saw his son for the talent he possessed but which everyone - the father in particular - had not seen. It is safe to state that from that day onwards, this was a life changing experience for the father and then for the son.

As anyone who has seen this film will know, people with that extent of physical disability were perceived in Irish society at that time as being ineducable. They were not people who should be seen to be going to school, as their value and worth to society were questioned. I am glad to state this has changed but more recently, disability also has been perceived to be a problem with the person. The perception has been that society is okay and the issue lies within the person. I have always tried to teach kids in school that the disability is not really the problem of the individual. Instead, it is the problem of society to acknowledge the disability and to change itself to facilitate having the minimum amount of issues to overcome to participate in society fully. In one tiny example, wheelchair-accessible buses are a recent innovation. Any wheelchair user's disability really concerns the issue of society not providing wheelchair access in the form of accessible buildings or transport to enable him or her to engage successfully with society.

In many ways, as Deputy McCarthy said, our concept of autism is often that of a hidden disability. It is not something people can point to and put their finger on because it often lies within. One of the best descriptions of autism was outlined in the book, The Curious Incident of the Dog in the Night-Time, which I used in school all the time. Many people have read it and I recommend that book to the parents of autistic children who approach me and to family friends who have had children who were subsequently diagnosed with autism because it is the closest description I can give them to help them to understand what their child's life might be like. The book was written by Mark Haddon and the main character is Christopher Boone who is a 15 year old. It is a murder mystery and it is about him trying to solve who killed the black poodle owned by his neighbour, Mrs. Shears. He does not describe himself as having autism, nor does the author refer to it, but Christopher describes himself as a mathematician with some behavioural issues. Interestingly, the author wrote on a blog that this was not written only about a child with Asperger's syndrome. He said it is about somebody who is an outsider in society and who sees the world in a surprising and revealing way. There is a message in that for all of us.


A problem exists with our lack of understanding and with the lack of provision of services to facilitate full participation by people with autism in our society. We experience that in schools. Unfortunately, with my hand on my heart, I can safely say that while there were many effective and good teachers in my schools, they did not understand autism beyond its definition and, therefore, they did not facilitate the learning that was needed to allow some of the children we had to have a positive learning experience because they did not have the tools.


We have an opportunity through the extension of the higher diploma in education, which I completed to become a secondary school teacher, from a one year to a two year course to provide for special education needs training. I have said to the Minister for Education and Skills that this is surely an opportunistic time to ensure every person who undertakes this two-year course to be trained as a special educational needs teacher in order that we are all equipped with the knowledge it took me five or six years in my career to understand so that I could engage with that 16 year old in a way to which he was entitled.


I am conscious parents are in the Visitors Gallery. They are the experts because they have been dealing with the issues we are debating before we even knew they were issues. They have been trying to explain their difficulties. They sometimes do not get sleep for days on end and try to cope with circumstances we could not even imagine. The voice of the parents must be at the centre of the national autism strategy Deputy McCarthy proposes in the legislation if the strategy is to be achieved because they have an expertise nobody else has in this field. They have lived, walked, slept and breathed the experience of living with somebody with autism. In many cases, they live with children who have not been diagnosed on the autism spectrum and, hopefully, the Bill will deal with this.


If we are committed to equal citizenship and to acknowledging that every one of us, whether we are gay or straight or whether we have autism or use a wheelchair and if we are entitled to the proper services to live our life with full dignity, there is an onus on the Government to aspire to that. Deputy McCarthy was honest when he said today is the first step of many to achieve a society that recognises that every citizen is equal. There is an onus on society to provide those services to ensure maximum participation by every individual born into and living in it.

12:20 pm

Photo of Joanna TuffyJoanna Tuffy (Dublin Mid West, Labour)
Link to this: Individually | In context | Oireachtas source

The contributions of previous speakers were shorter than anticipated and, therefore, we have until 1 p.m. before the Minister replies.

Photo of Frank FeighanFrank Feighan (Roscommon-South Leitrim, Fine Gael)
Link to this: Individually | In context | Oireachtas source

I do not know whether that is a put down.

Given the day that is in it, I would hate to deny Deputy McCarthy the honour of replying to the many poignant contributions from all sides of the House that support the legislation. I thank the Deputy for introducing the Bill. It will be a template for future Governments to deal with autism and to harness the potential of many autistic children and adults. It will be a road map for the provision of services. The Bill is worthy and I thank him for the work he has put in. It is great that he has cross-party support.

In my own county, the Brothers of Charity provide great services and in every area similar organisations provide these specialised and intensive services and we should acknowledge them. A number of films have been mentioned but "Under the Piano" has always touched my heart. It highlighted how families can sometimes be divided on how best to address the needs of autistic children and how to tap their potential. Over the years, we probably have not understood the difficulties because the differences in these children were not appreciated. However, we have come a long way and the Bill will help the Minister, the Government and the relevant organisations regarding how best to map a future for autism services.

I look forward to Deputy McCarthy's reply. We need an understanding of these issues. We are elected by people who have various issues they want raised. We are a voice for them and I am delighted the voice of those with autism has risen through the various levels of democracy to reach the floor of the Dáil, where decisions can be made and Ministers can be influenced. I am sure the Minister for Health understands all the issues and problems relating to autism and how best to deal with them. This debate is democracy at work.

Photo of Bernard DurkanBernard Durkan (Kildare North, Fine Gael)
Link to this: Individually | In context | Oireachtas source

I am delighted to have an opportunity to contribute to the debate on this landmark legislative proposal. It is timely and useful that we have an opportunity to focus on this issue, which has been with many of us for many years. I compliment Members who have contributed, including the Minister and Deputy McCarthy. The quality of the contributions reflects a knowledge and recognition of the subject matter that has not been all that evident previously, particularly during the boom times. When the country was booming and money was available for every use one could think of, it would have been a fine time to recognise the difficulties of families and children with special needs of all kinds and to put in place services that would benefit future generations. Deputy Lyons is correct to refer to society's responsibility. Society did not care because it was gorging itself at another fiesta. From time to time, it takes somebody to intervene to focus attention on the important issues in life and to recognise everybody is not fortunate to be able bodied, physically and mentally, everybody is not the same and some people have difficulties to overcome.

There are variations of autism. One also has other disorders such as attention deficit disorder, ADD, attention deficit hyperactivity disorder, ADHD, and minor variations thereof, all of which create a problem for the children in question and their immediate families. I recall a mother who appeared with her child at one of my advice centres, neither of whom knew what was wrong. However, both of them knew there was a problem but could not put their finger on it. The child's school did not know what was wrong either and did not know how to deal with the problem.

I pay tribute to the parents of children of special needs who, over the years, have gone to the ends of the earth to identify the problem with their child as they tried to obtain a diagnosis and have fought for the right of their child to have an even chance to survive in the impersonal, competitive world in which we live. While a great deal of work has been done in this area, we are still far from where we need to be.

It will have been clear to anyone listening to this debate that all Deputies who spoke understand the enormity of this issue and recognise the need to do something about it, as opposed to complaining and doing nothing. I compliment Deputy Michael McCarthy on having the foresight and focus to identify this issue.

I will quickly address the fundamental elements of this issue. It is crucial to children and parents that a diagnosis is made available at the earliest possible stage. Backup services, which parents frequently bring to the attention of Deputies, are also crucial. The current economic circumstances have driven both parents in many families into the workplace to pay the mortgage. The opportunities available to parents are limited as they are up against it regardless of which option they take. Given the pressures on both parents to work to pay the mortgage, how are they expected to have the needs of children with special needs attended to? In such circumstances, one parent will have to stay at home, thus placing even greater pressure on their ability to repay their mortgage. The competing economic demands and pressures on parents and families of children with special needs must be recognised, especially in the current economic climate.

As we get older, we tend to believe that children are not sensitive to the needs of others. This is not the case as children recognise such issues straightaway. Children with special needs must be able to believe they have an opportunity to compete and be independent in the competitive world. Many support groups have developed over the years to support the independence of people with special needs, which is a critical development. Children with special needs must have access to education that is capable of meeting their requirements and ensuring they secure as good an educational grounding as everyone else. If this means we must introduce special measures, so be it. That is the price society must pay because if we do not do so, we will pay a higher price though neglect.

A number of speakers referred to the economics of the issue. Deputy Kevin Humphreys, for instance, noted that we do not have money and I accept that. This is, however, without a shadow of doubt, the appropriate time to prepare measures that will fall into place when money becomes available. If we do not do so now, other competing factors will take precedence. For this reason, immediate provision must be made.

Facilitating people who have special needs, whether adults or children, generates significant economic benefits. Once a person with special needs becomes capable of fending for himself or herself, even if not fully, society benefits economically as the individuals in question are no longer dependent on society and have the wherewithal to do something for themselves. Many have done this very well and some have done it better than able bodied people. This is not a reflection on anyone. The economic benefit comes in two forms. The person no longer depends on society and he or she derives self-satisfaction from being able to do a job competently. This is of great importance to able bodied people and persons with special needs alike.

To return to the issue of the sensitivities of children, one of the saddest things one encounters is the look on the face of a child who knows, prior to a diagnosis, that there is a little problem and perhaps feels bad because he or she does not want his or her parents to feel bad. On the other hand, one has parents who know there is a problem and will go to the ends of the earth to have something done about it. In many cases, they spend years trying to achieve something for their child but their efforts are repeatedly frustrated.

I agree with the comments made about data protection. Legislation providing for data protection was introduced to try to ensure that people did not, for mischievous reasons, access the personal information of others to use it either for their own benefit or to the detriment of others. Data protection has, however, been used as means of protecting some people and to prevent public representatives and others from making representations without first obtaining permission. The legislation was not intended to be used for this purpose. It is ridiculous that when one tries to help out a family or individual, one is flummoxed because a data protection barrier is used purportedly to benefit the person or family concerned when this is clearly not the case. Data protection provisions need to be set aside as a matter of urgency. I am sure colleagues are experiencing the same problem I face when writing to lending institutions or health service providers on behalf of constituents, only to be asked to provide evidence of the consent of the individual in question before a reply is provided. This is utterly crazy. Members of Parliament are elected to represent their constituents and must make representations in favour of or against constituents' interests in the common good. That is our job and the purpose for which we are elected and if we are impeded in doing this job, a problem arises.

I will briefly discuss another issue I have tried unsuccessfully to have addressed over the years. We must encourage more medical research into autism. The incidence of autism in Ireland is high by European and global standards. I note Deputy McCarthy's point that improved diagnosis is providing a better picture of the condition. We can put a man on the moon and mankind has recorded many major achievements as well as disasters. In light of this, it is difficult to understand the reason it is not possible to have greater medical research in an area as vital as autism. The same principle or criticism applies to illnesses such as cancer.

A careful analysis of the incidence and diagnosis of autism across Europe would be beneficial to all concerned. Evidence suggests there is a higher incidence of heart failure and respiratory illnesses in certain regions of Europe. Such comparisons are valid and beneficial. I am a great believer in having the greatest possible amount of research made available to the medical profession in order that it can inform the general public.

If we can do something to address the issues at an earlier stage, we should do so, but we do not have that information.

Backup for parents and support for the individual through his or her life are necessary. As has been stated, education is a crucial factor, as is recognition of the fact that the individual is able to survive in the competitive world and work at whatever he or she chooses. We must revise our thinking and legislation on this matter and examine what level of support a family needs during the childhood of the person with special needs. As that person enters young adulthood in particular, we must try to provide whatever support is necessary. If an intervention is required, it should be made in a helpful and meaningful way without imposing on the individual.

Parents in these circumstances have presented to us all. It is a great process. Some commentators are disparaging about the degree to which elected Members of Parliament meet their constituents to learn of their needs, but doing this is important. Be someone an elected public representative at national or local level, nothing brings a point home more than when a person presents with a problem eyeball to eyeball and face to face. The representative hears from the individual exactly what his or her problem is.

In my Dáil experience of many years, parents will go to the ends of the earth, spend money that they do not have and raise loans to do what is necessary to help their children. We should give them the backup they need.

12:40 pm

Photo of Michael McCarthyMichael McCarthy (Cork South West, Labour)
Link to this: Individually | In context | Oireachtas source

Hear, hear.

Photo of Joanna TuffyJoanna Tuffy (Dublin Mid West, Labour)
Link to this: Individually | In context | Oireachtas source

I am grateful for the opportunity to say a few words. I welcome the Bill and Deputy McCarthy's initiative in introducing it. I also welcome the Minister's approach, in that he intends to accept the Bill and consider it further.

Now that we have the new process whereby Bills can be introduced by Government backbenchers and Opposition Deputies, it should be used more. If we are to be a legislative house, legislation should not come from Departments alone. I urge the Government to do more to work with the Opposition on some of the latter's proposals. It is a two-way street, though, as the Opposition must table legislation that has a chance of moving forward.

While in opposition, the Minister for Justice and Equality, Deputy Shatter, successfully introduced progressive legislation with Government support. A reform of the family law system, it has withstood the test of time. In a previous Government, the former Minister for Justice, Equality and Law Reform, Mr. Michael McDowell, accepted legislation from the Minister for Communications, Energy and Natural Resources, Deputy Rabbitte, who was then in opposition, on a matter that had been brought to the latter's attention by constituents.

I agree with Deputy Durkan. As legislators, we legislate because we are informed by our constituents. We empathise with them through our constituency work, enabling us to bring something to bear when legislation is discussed. It is time that we started to stand up for our important constituency work. We are not academics. We are representatives of our constituents to the Dáil.

I am Chairman of the Joint Committee on Education and Social Protection, which has been examining the Finnish education system. Finland performs well in international tests on literacy, numeracy and so on. A major factor seems to be the fact that there is a high degree of equality in its education system. Finnish politicians and people involved in that system constantly use the words "equality" and "equity".

Finland has taken a proactive approach to special needs. There is considerable autonomy at local level and within schools in terms of how they organise the curriculum. Finland attaches significant importance to the question of special needs. Its approach is underpinned by legislation. If people have special needs, they are identified and are provided with various levels of support, including plans for the students concerned. This support might comprise a short-term, intensive intervention or a longer term approach.

This reminds me of my time on the Oireachtas education committee some years ago when the Education for Persons with Special Educational Needs Act 2004 was being introduced. It was intended to be similar to the Finnish approach, but it has not worked out that way in practice. We still have much to do. This Bill could be a part of that work on enhancing the nature of education to ensure that it is pupil-centric, concerned with pupils' needs and ensures that all students have equal opportunities.

I welcome the Bill and hope that it form the basis for a better approach to providing education and other supports to people with autism.

Photo of Seán BarrettSeán Barrett (Ceann Comhairle; Dún Laoghaire, Ceann Comhairle)
Link to this: Individually | In context | Oireachtas source

Lest others wish to contribute, that completes the list of Deputies wishing to speak. I am glad to say that I counted 14 speakers.

Photo of James ReillyJames Reilly (Minister, Department of Health; Dublin North, Fine Gael)
Link to this: Individually | In context | Oireachtas source

I thank Deputies for their contributions. Many personal experiences have been expressed, as has a real understanding of what it means for people with autism and for any parent who is given a diagnosis of his or her child having a serious disability. The parent's feelings plummet. I doubt that any parent ever forgets the day the diagnosis is made and what he or she views as the child's bright future is taken away, as it were.

Fortunately, it does not always need to be that way. With early intervention, there can be a bright future for many children with autism, even those who may not have spoken until they were five years of age or may have been misdiagnosed as being intellectually disabled. They can make a real and valued contribution to society. In order to achieve this, though, their parents and families need support. As many Deputies have stated, society needs to come some of the way to meet the needs of people with special needs or disabilities. Not only is it the moral, ethical and right action to take, but it enriches society and brings forth the abilities that are often not seen.

I commend Deputy McCarthy on his initiative in introducing this Bill. I hope that many of those who believe that the future has been darkened for them by such a diagnosis will come to learn that it often brings some amazing abilities. With the right supports, those abilities can be allowed to shine through.

Photo of Michael McCarthyMichael McCarthy (Cork South West, Labour)
Link to this: Individually | In context | Oireachtas source

I am not being pedantic, but I counted 16 speakers. I acknowledge the staff of the House, the Ceann Comhairle and his office for allowing me to introduce this momentous legislation. I deeply appreciate the opportunity. Outstanding contributions have been made on all sides of the House since the debate commenced off at 10.30 a.m.

The profession of politics and the body politic comes in for constant scrutiny. Unfortunately, on many occasions much of the comment can be negative and anything but constructive. Sometimes practitioners bring that upon the system. We have had approximately 1,200 Deputies since the foundation of the State - I do not refer to members of local authorities or of Seanad Éireann – and the vast majority of those men and women worked very diligently for the people they represented. We should never lose sight of why we are here – to represent our constituents and our people. Today was a fine example of that.

I acknowledge your role, a Cheann Comhairle in allowing today’s debate to take place. None of us should ever apologise for being a conduit between what is out there and our constituency. That is the genesis of the issue for me. I have met too many parents who have found it extremely frustrating that when their children become adults, they reach a cliff face and there is no continuity of services for their children who have autism. That is why the Bill specifically relates to adults with autism.

I also acknowledge the fact that political reform allows us to be present today by having extra sittings. I also applaud the manner in which we have witnessed collegiality around a significant issue this morning. To paraphrase Deputy Humphreys, the Minister reacted humanely to the issue. He did not get involved in a political sideshow or kicking. He responded to the legislation in a manner that is heartening for me, and especially for the families of people who have children, including adult children, with autism. His endorsement of the legislation is significant and historic. I wish to put on record my personal gratitude to the Minister for taking the Bill himself and for reacting in the manner in which he did based on his personal experience, medical background and political duties. That is hugely heartening for me but more so for the families of children with disabilities.

One of the aspects of legislation to which reference has been made is the interdepartmental nature of the issue. That is critical. We should never view the issue as being solely one for the Minister for Health or the HSE because people with autism are like everyone else in that they will access services such as education, housing or jobs. That is why it is critical that we emphasise the interdepartmental aspect of the legislation. The Department of Health will be the main driver but we must acknowledge the wider aspect of the issue.

Deputy Ó Caoláin made an interesting point when he referred to the case where a mother of a person with autism had to take a case to the Equality Tribunal. The issue of concern is that the local authority had discriminated against the mother and her child. That was the kernel of the story. That is why we are present today requiring the Government to introduce a strategy so that no other family will ever have to have recourse to an organ of the State to fight for what is everybody else’s right. We should never deny such rights to anybody else. By enacting the legislation we will make a clear statement that the situation should never arise again.

I acknowledge the contributions of the spokespersons from the Opposition parties – the Technical Group, Fianna Fáil and Sinn Féin. I also acknowledge the poignant and personal contributions made by Members on their personal experience. We come to the House as legislators but we are all human beings. We are all part of families and we live in communities. None of us is unaffected by what goes on around us, despite what some element of the commentariat might like others to believe. By bringing that with us today we have improved the quality of debate.

As I said in my initial contribution, every journey begins with a small step. Every time one sets sail there is always a port and a journey. Today is the first but significant step in that journey. I look forward to the legislative process and to Committee Stage. I also look forward to engagement with others and ultimately to producing robust legislation that vindicates the rights of adults with autism.

Many points have been made and I will not refer to them all, but I wish to share with the House a card I received from a young man who was in the Visitors Gallery, 20 year old Conor Deeney from Donegal. He said in his note: “Thank you for helping all the people with autism. Love from Conor Deeney.” There is a beautiful quote on the front of the card. It is a Chinese saying: “To get through the hardest journey we need to take only one step at a time but we must keep on stepping.” I look forward to the rest of this journey. I acknowledge the commitment and endorsement of the Minister and I thank all sides of the House.

Question put and agreed to.