James Reilly (Dublin North, Fine Gael) | 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.

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