John Paul Phelan (Fine Gael)

I welcome the Minister of State. I wish to raise a number of issues with him which concern my area of Kilkenny. It has been brought to my attention that some schools are seeking funding for new buildings and development facilities for autistic children. One of them is the School of the Holy Spirit in Kilkenny City, which currently caters for 12 to 15 autistic children from the city and its environs. Last weekend, I was contacted by, the parent of a child in that school. Her son is 12 years of age. She was very upset because she knows that once he is 13 or 14 and leaves primary school, there is nowhere in Kilkenny where he can receive secondary education. I urge the Minister of State to contact his colleague in the Department of Education and Science with a view to expediting the building of the proposed new second-level School of the Holy Spirit for autistic children in Kilkenny city and its environs.

I have also been contacted by a group of parents who have set up an organisation with a view to establishing a school in Goresbridge in Kilkenny, in the former St. Enda's national school. This is an old building, which has not been used for a number of years but it is in good repair. There are some six to ten autistic children within that immediate catchment area. The group of parents is looking at this building with a view to establishing a new national school for the children of the south Carlow and east Kilkenny area, who are affected by autism.

I recently came across a surprising statistic, which I have not been able to verify. It suggest that one in every 100 children born in this State is affected by some form of autism, in a mild or more severe form. It is likely that everyone in this House and everyone in the country knows a family affected by autism, and we are familiar with the stresses it places on family life. This is an important issue, and I am glad we have the opportunity today for another discussion on it.

A number of surveys and reports on autism have been carried out over the past few years. There appears to be a large worldwide increase in the rate of those being diagnosed as autistic. In the US they are talking of an autism epidemic. According to figures released in the UK, approximately one child in every 100 features on the autistic spectrum. In this State there are significantly more autistic children coming into the system annually than in the past, and the demand for services to meet the needs of this special population will continue to grow. All Senators are familiar with the growing demands on national schools throughout the State to provide special needs assistants, and the problems involved. I urge the Minister of State to contact his colleagues in the Department of Education and Science with a view to providing extra funding for special needs assistants.

In 2002, 25,500 people were registered on the national intellectual disability database, representing a prevalence rate of 6.49 per 1,000 of population. The prevalence rate for mild intellectual disability is 2.4 per 1,000, and for moderate, severe and profound intellectual disability the figure is 3.7 per 1,000. From those figures we can see that the prevalence of autism in the State is significant in terms of numbers. Families affected by autism live under great pressures. In 2002 there were 23,000 people with intellectual disability in receipt of specialised services, representing 90% of all those registered on the national intellectual disability data base. Some 468 people, or 1.8% of those so registered, are currently without services and are identified as requiring appropriate services in the period 2003 to 2007. This number has reduced by 47, or 9%, from 2001. The remaining 1,930 people are not availing of services and have no identified requirement for services during the planning period of 2003 to 2007.

Most of this group are in the mild and not verified ranges of intellectual disability and their continued registration on the NIDD is being reviewed. However, the remaining 33% of this group have a moderate, severe or profound degree of intellectual disability. The need for continued monitoring of the circumstances of these people is highlighted. There are just over 8,000 people in receipt of full-time residential services, a net decrease of 194 since 2001. The number of people with intellectual disability accommodated in psychiatric hospitals continues to fall down by 162 since 2001 to 515. Approximately 22,500 people avail of day programmes, of this group 7,500 are in full-time residential placements and the remainder attend services on a day basis. Over 60% of all children and adults with intellectual disabilities live in a home setting with parents, siblings, relatives or foster parents. In 2002, just over 2,000 people were without services or without a major element of service. The provision of 1,633 full-time residential placements and 682 day programmes is required to meet the needs of this group in the period 2003-07.

In addition, 1,446 people will require residential support services during this period. Most service needs arise immediately. A group of 308 individuals living in psychiatric hospitals in 2002 has been identified as needing to transfer from these locations to more appropriate accommodation over a five year period. In spite of a significant investment in intellectual disability services in recent years and a corresponding growth in the level of service provision, the demographic factors outlined above are certainly contributing to a long waiting list for services, in particular for full-time residential places. In June 1997, Dóchas was established in response to the desperate need for an organisation to represent the needs of people diagnosed with autistic spectrum disorder, ASD. Dóchas works in collaboration with the Departments of Health and Children and Education and Science to highlight the individual needs of ASD people and also to secure appropriate services for their members. To date, Dóchas has acquired an office in O'Connell Street, Limerick which operates daily from 9 a.m. to 5 p.m. as a service and information centre. It operates a summer camp for children with autism for three weeks during the month of July. It holds monthly support group meetings for families with autistic members and it has been successful in highlighting the need for a respite centre for autism. The Red Hill respite unit opened in July 2000 and run by Rehab Care in association with the Mid-Western Health Board appears to be successful.

Dóchas is dedicated to creating hope and a practical future for people with ASD disorders within the embrace of family supervision. Dóchas is currently campaigning for respite services for adults in the Mid-Western Health Board area. However, such services are needed in all health board areas. Their main concern is that while respite care is available for children, families cannot avail of respite care once the child becomes an adult.

Children and adolescents with autism become adults with autism, but it is only in recent years that it has been recognised. Prior to 1943, the year Mr. Leo Canner identified the syndrome, people with autism tended to be labelled schizophrenic or mentally retarded. There are services available for children and adults who are either schizophrenic or mentally retarded but none specifically for those with autism. People with autism were placed in whatever services were available, even though those services were not designed to meet their needs and generally proved to be completely ineffective. This trend is gradually changing for children as advocates procure more services, designed specifically for people with autism. As the services available to adults with autism expand, the needs of adults are being discovered in more detail.

Adults with autism are emerging as people who very often require a continuation of the intensive training they received in childhood and adolescence during their educational years. Adults are able to retain skills they have acquired and are able to learn new skills when they partake in specialised services in adulthood. Without such a continuation of intensive services, however, many adults with autism will regress terribly. As children and adolescents with autism become adults, many of their needs remain the same, but many change. Adults require some skills that children and most adolescents do not yet need, for example adults need to be able to generalise their skills across a wider variety of environments because they live and work in the community. Adults also need to be prepared for the changes their body goes through as they mature. Adults need to be taught how to control their diet and related issues. Adults also need to be taught to engage in differing age appropriate activity, such as taking a walk or jogging instead of playing on a slide or a swing.

We have seen in the past number of years a significant increase in the amount of funding provided in this area. The figures have shown there is a significant increase in the number of people who will require these services in the course of the next few years. I urge the Departments of Health and Children and Education and Science to co-ordinate their approach to ensure that these people, many of whom were not diagnosed as autistic as a child, have appropriate services. I urge both Departments to continue to increase funding and to improve the services available.