Charlie McConalogue (Donegal North East, Fianna Fail) | 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.

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