I thank the committee for allowing us to make this presentation. Many perceive autism to be a plight on all of our houses. However, the real plight is the lack of knowledge and understanding among many in government, State services and society of this unique disability. This situation has led many parents to express feelings of bewilderment, mistrust and frustration.
I am attending this meeting to share with the committee an insight into the needs of young people with autism and to demonstrate that the recognition of this disability is a fundamental component in improving the quality of life of people with autism and their families. Individuals do not grow out of autism, nor does it go away on its own. Autistic children grow up to be adults with autism. They will be adults for longer than they will be children. The much improved behaviour and skills seen in the current generation of our students will inevitably erode without continuous maintenance. Young people and older adults with autism need ways to maintain their skills and to continue to learn new skills. The money spent on their therapy will have been in vain if additional money is not invested to maintain their skills. While young people on the autism spectrum must transfer and begin to meet the challenges of young adulthood, they need ways to maintain their skills and continue to learn so that they can become contributors to society instead of being a burden.
As my submission is extensive, I will only cover bits of it. I hope the committee will take the time to read it, as autism is a wide area and I have tried to highlight the matters that affect families. My submission gives a blow-by-blow account of what has occurred in our school in the past ten years.
Approximately 24 years ago, a departmental report on the psychiatric service found that the prevalence of childhood autism was at the same level in Ireland as it was in other countries. The report recognised that, while autism seriously affects the learning capacity of a child with autism, it is distinct from the global definition of a mental handicap. While the report recognised that some children with autism are mentally handicapped, most mentally handicapped children do not have autism. Given that this opinion is well-supported by international research, we must ask why, 24 years later, only one Department officially recognises autism.
The report also identified the need for individual behavioural programmes and stated that a high staff-child ratio would be required. It indicated that a considerable number of people with autism would continue to require intensive treatment and care during adolescence and beyond. Furthermore, resources for treating centres must include provision for social skills, vocational training, sheltered workshops and recreational facilities. However, the report also contained the opinion that the environment surrounding people with autism should be similar to that appertaining to many mental handicap centres as long as the appropriate staffing and facility resources are provided. This latter comment has led to the current situation, namely, the belief that programmes and facilities for people with intellectual disability are well suited to people with autism. From international research, we know this is not the case and can lead to challenging behaviour and ill health.
Many speakers have referred to the Department's 2001 task force on autism, which found the key element in people with autism achieving equal status to be education. The report highlighted the task force's disquiet with the level of investment and the lack of planning to meet the needs of people with autism. To access education, a person with autism requires access to other Department of Health and Children professionals. The committee has heard how this access does not exist. Naturally, a cost will be associated with meeting these needs, but it must be faced by society and the administrators in a range of Departments if we are to make our education system more egalitarian.
The eastern regional health authority's 2002 report acknowledged that, historically, children or adults with autism and intellectual disability had received their services from the intellectual disability providers. However, a lack of resources or awareness means that those presenting with dual disability were provided with generic services that did not take cognisance of their special and unique needs. Did the Government or relevant Departments do anything to rectify this situation? No.
People have highlighted the national intellectual disability database, which was set up as a planning tool to identify people and provide services. There is no field in that database for autism and I, as a parent of a child with autism, refuse to put him on that database. He is not included in statistics as requiring a service.
Many young people with autism find that opportunities at second level, third level, vocational training and further and continuing education are severely limited across the spectrum. The task force highlighted that.
Another matter highlighted by the task force was the re-categorisation by the health boards of people with autism as having a learning disability. It was not referred to as autism, which led to the proper services not being provided. For many on the autism spectrum in Ireland, the progression from second level schooling to adult life will be the most difficult transition. Planning for the transition is ad hoc and must be incorporated into each educational programme during the early teenage years. This transition planning must accompany ongoing outreach counselling and support, especially for those with a higher functioning autism, to which Aspire has referred. They need access to an independent advocate through the transition period and particularly in the formulation of care plans, as recommended in the report in 2002.
The advocate programme has recently been cut by the Department of Social and Family Affairs. If the Government does not provide effective autistic-specific adult services and support, we will be failing a generation by wasting considerable resources, years of time and effort by the individuals, the families and the dedicated teaching staff who have prepared them for a life of independence and productivity. Our Government cannot terminate the supports these young people still need to continue to improve their communication, behaviour, management of their social challenges and social and community integration. If these young people do not get continuous funding for their further education training and day services, we can expect to witness a marked deterioration in their skills. The gaps have been highlighted and my research shows that autism and Asperger's syndrome do not fit into the eligible criteria operated by many agencies. People are excluded and denied access to, or participation in, appropriate treatment or provision.
Consequently, many are falling through the gaps in our system that create unhelpful boundaries and definitions and a marked lack of responsibility from the State, which has a duty of care to people with autism. Until the capacity is built in the Department of Health and Children and the HSE to meet needs, and while services continue to be driven by budget means, and eligibility criteria are considerably tightened to control expenditure, many people will be deprived of access to the specific help and support they need.
When the State fails in its duty to provide a service, the burden of the financial and personal responsibility is shouldered by parents. When children are transferring from one system to another, such as the primary system where children are in an ASD unit or special school and are then mainstreamed, the HSE is saying that it will support the children in a six month transition and then services will be guillotined. Those children will have four or five years in the mainstream system with no help or support. This comes under the new system of PCCC funding outlined in the report, which I hope members will take the time to look at.
People with autism should have the same rights enjoyed by all Irish citizens. Those should be enhanced and enforced by appropriate legislation in Ireland, to include the right to live independently and the right to representation and involvement in the decisions involving their future. They also have the right to accessible and appropriate education, housing assistance and support services and sufficient income, as well as the right to freedom from fear, threat or abusive treatment.
The new funding structure is not very user friendly. We believe the way forward is to move to self-directed supports and to individualised funding, a term which is not popular among service providers or the HSE. There is nothing more powerful than an idea whose time has come. The presentation outlines in detail the advantages of individualised funding and the barriers thereto. The advantages are numerous and research from other countries has shown that it is not the black hole that many within the HSE would maintain. Individualised funding provides choice and control over what people with disabilities and their families want. It also has the potential to address the cultural diversities of families far better than the block funding system currently in use. Families are more likely to become informed as to the available services and programmes and knowledgeable, independent planners can assist families to properly plan and then negotiate with the Government to reduce the isolation and fear of families. Individualised funding also ensures that meeting the needs of the disabled person is the primary objective.
The barriers to individualised funding arise because it represents a shift in power away from the State funded agencies and service providers towards the people who require supports. For many social workers, agency workers and others who support people with disabilities and their families, this represents a welcome change to a more responsive system with the potential to truly empower people with disabilities and their families. However, it must be carefully managed, a fact which we readily acknowledge. We recognise that individualised funding represents a threat to the status quo of certain agencies, unions and Government employees. This is evident in the amount of misinformation circulating about individualised funding and the resistance to it from some Government and other agencies.
Countries like the United States of America, Canada and the United Kingdom, have come to recognise the difficult situation in which young people with autism find themselves and are taking steps to rectify the problem by recognising autism as a separate disability and by working with autism organisations to identify the needs of adolescents and adults with autism. We in Ireland must follow suit. We must acknowledge the adults who will need to be served and supported in the coming years. It is apparent that despite many initiatives and high-profile awareness activities by parents, the desperate plight of the person with autism remains unsolved. There is an enormous demand for consolidation efforts to be applied to provide appropriate services for this large population of individuals.
The population estimate for individuals with autism in Ireland is 34,000 and we are ignoring them. The impact on the economy and on public health is inestimable but of sufficient magnitude to warrant Government direction and leadership. Ownership by Government of the autism initiative is the unavoidable way forward. The identity of autism as separate from other disabilities in legislation would be a major step forward. There is also an opportunity to follow the example of Sweden, the United States of America and the United Kingdom, where a significant impact on both health and the economy has been made by including autism in their statutes, resulting in the practical initiation and implementation of appropriate supports. Like all parents --