Michael McCarthy (Cork South West, Labour)
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I thank the Ceann Comhairle for selecting this matter. My interest in it was born out of the frustration I felt on recently receiving a reply to a parliamentary question confirming there are no plans at present for the development of a national autism strategy or for the introduction of specific legislation on autism. Such a statement is disappointing given the increasing prevalence of autism in Ireland and because the Department's stance is wildly out of sync with international standards. In this context, I appeal to the Minister to review the position and to consider taking a different approach, based on the arguments I am about to outline. I note for context that in the United States, the number of children diagnosed with autism has doubled over the past decade. While no equivalent figures are available yet for Ireland, an estimated 600 children are born here each year with this condition and that figure is rising. It is hard to determine whether the increase can be attributed to an actual rise in the incidence of autism, improvements in diagnostic tools or greater access to psychological services. However, there is no doubt but that autism has risen dramatically in Ireland in recent years.

At present, Ireland is the only country within the British Isles that does not have autism-specific laws or a national autism strategy in place. In 2008, the Welsh Assembly Government issued an autism strategy and began to implement it immediately. In 2009, the House of Commons brought into force the Autism Act 2009 and quickly followed it the following year with its strategy for adults with autism. In 2011, the Scottish Government launched its national autism strategy and the Autism Act (Northern Ireland) 2011 was passed. The latter legislation compels the authorities there to publish an autism strategy within two years of the Act being passed. In recent years, there has been a general move towards implementing autism-specific strategies in many western democracies. As the aforementioned examples illustrate clearly, this movement has been prompted by the increasing prevalence of autism, the soaring cost of providing autism services, a squeeze on resources and the need to prioritise such resources effectively. There are many lessons to be learned from the Government's counterparts in the British Isles. For example, the proposed Scottish autism strategy Bill would place a statutory duty on the Government to prepare and publish a strategy to meet the needs of children and adults with autism and to consult with appropriate organisations and people. It also would oblige local authorities and local health boards to comply in respect of the provision of diagnostic services, the identification of children and adults with autism locally, the assessment of their needs, the planning and provision of services, the training of staff and leadership at local level.

As I noted earlier, approximately 600 children are born in Ireland each year with autistic spectrum disorder. However, these are merely approximate figures as the absence of a national autism strategy leads to an abject absence of prevalence rates. Naturally, this has huge implications for the provision of services nationally, as without access to a reliable bank of statistics in this area, it is difficult for service providers to know what policies and guidelines should be put in place for future planning of services. One should bear in mind that behind the figures are real individuals, real households and real families who are struggling with this condition. Autism spectrum disorder is a complex and lifelong developmental condition and while some people can live relatively independent lives, others have high dependency needs and require specialist care.

Autism also presents a significant public health challenge to the State. Until such time as a national autism strategy has been put in place in the State, there will be an ongoing cost to society of the resources that are wasted. For as long as services fail to be properly targeted, ineffectiveness and waste will continue and society will fail to equip people with autism with the right supports that ultimately will enable them to lead independent and productive lives. If one borrows from the example of the United Kingdom, components of a national strategy could include a national autism programme board similar to that which exists in the United Kingdom, a programme to develop training with health and social care professional bodies, autism awareness training for those who work with people with autism and guidance on making available public services for adults with autism, such as improving buildings, public transport and communications. In conclusion, the latter point already has been addressed in the HSE national review of autism services that was published in February 2011. It undertook to carry out a review of existing services and aimed to identify pathways on how services can be accessed and delivered.

Kathleen Lynch (Cork North Central, Labour)
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I thank Deputy McCarthy for raising this issue. As he noted correctly, this is an issue that is increasing and of which the Government must take account. Autism spectrum disorder is a complex neurodevelopmental condition that both affects approximately one in every 100 citizens in Europe and has an impact on their families and society at large. Policy in this area aims to enable people with complex disabilities, including those with autism, to live as independently as possible within the community. The Government is committed to providing specialist disability supports to enable each individual with a disability, including those with autism spectrum disorder, to achieve his or her full potential and maximise independence, including living as independently as possible.

The management and delivery of services related to autism is the responsibility of the HSE under the Health Act 2004. It provides services for individuals with autism spectrum disorders from childhood to adulthood, either directly or indirectly, by both statutory and non-statutory service providers. Services are provided in a variety of community and residential settings in partnership with service users, their families, carers and a range of statutory, non-statutory, voluntary and community groups. It is worth noting that a number of Departments have responsibility for the provision of services to people with autism. The Department of Health is responsible for health-related aspects, while the Department of Education and Skills has responsibility for education aspects. Moreover, the Department of Children and Youth Affairs also has a role in respect of services for children. In recognition of the cross-departmental issues arising on autism, a principal officer now has been appointed in the Department of Health to promote a co-ordinated approach to the needs of children, adolescents and young people with complex disabilities, including autism.

The Health Service Executive published a national review of autism services in February 2011. The aforementioned review outlines the historical background, the current models that exist, the gaps in service provision and the need for a consistent and clear pathway for individuals to access services in the least restrictive way. The report highlights the imperative for a clear focus on the individual and his or her family in ensuring the needs of the individual remain at the centre of service provision. It is intended that future provision of services for children and adults with autism will be developed having regard to the Government's commitment to mainstreaming, that is, to enable people with a disability to have access to the same services as the general population, as well as receiving the appropriate support and intervention to address individual needs. No plans are under consideration at present in the Department of Health for the development of a national autism strategy or for the introduction of specific legislation on autism. The recommendations of the national review of autism services report will be implemented through the reconfiguration of existing service provision and having regard to the most efficient and effective use of resources available in the current economic climate. The Department of Health's forthcoming value for money and policy review of disability services will set the wider context for achieving a person centred disability service overall. I again thank the Deputy.

Michael McCarthy (Cork South West, Labour)
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Unfortunately, identifying the cause of and finding the cure to autism still eludes the medical profession. In the meantime, however, the best approach is autism-specific education and early intervention in order that people with the disorder can live culturally, socially, economically and spiritually fulfilling lives. I welcome the Minister's recent pledge to invest €2 million in additional funding for early detection and treatment services over the next two years. I suggest that to ensure the effective utilisation of this investment, a national autism strategy be developed and implemented. In addition, a huge opportunity arises, in the context of Ireland's Presidency of the European Union in 2013, to make autism a European Union priority from a policy perspective. Many challenges exist at European Union level in respect of autism and Ireland's Presidency affords it a glorious opportunity to put this issue at the centre of its agenda for the Presidency. For too long, people with autism have been falling between the cracks of an overweight system and as a result, many people have led lives that were not as fulfilled as they could have been. This is no longer acceptable and a national strategy provided for by legislation would both transform services and would change attitudes across society. The Minister of State has demonstrated great bottle and passion for her briefs within the Department of Health and I believe this to be another area in which the right thing can be done for those who unfortunately suffer from this condition.

Kathleen Lynch (Cork North Central, Labour)
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The matter is not currently under consideration. What the Deputy proposes has neither been ruled in nor out. Additional resources have been made available in recognition of the prevalence of autism. As stated by Deputy McCarthy it is difficult to know if this is as the result of clearer diagnosis or an increase in the incidence of autism.

We need to gather data, similar to that which we have in respect of other disabilities, on this issue. I acknowledge there is a need for discussion around whether autism is a disability. It has for instance been suggested to me that the inclusion of an additional question in the census might be of assistance in this regard. We will need to consider this. We cannot plan unless we have the type of data and information we need to be clear on where money needs to be expended. Some €3 million will be allocated over the next three years to the early detection and treatment of autism. Despite the allocation of additional funding to other disabilities no sustainable service has been put in place. We need to ensure that when money is invested in development of a service, that service is sustainable. This is important in the context of autism in particular given that structure and the need to know what is happening is important not alone to those affected by autism but their families.

It is hoped that the gathering of information and the putting in place of a sustainable structure will lead to a better service for everyone.