Date Published: 28 July 2008

Continued investment and expansion of services needed for children aged 0-5 with an intellectual disability

Health News from Ireland (Eire)

A new report from the Health Research Board (HRB) examines the demand for, and provision of, treatment for children aged 0-5 years with an intellectual disability. The report, which is based on figures from the National Intellectual Disability Database (NIDD), shows that 971 children will require a change or upgrade of the day service they currently receive during the next five years.

There was an increase of 8% in the number of children registered on the NIDD from 1429 in 2003, to 1542 in 2007. The report highlights that three out of four of these children have not had their level of intellectual disability confirmed by the age of five – the actual number of unconfirmed cases has risen from 860 in 2003, to 1181 in 2007.

There are valid reasons why these children have not had their level of intellectual disability confirmed, according to Sarah Craig, Head of Disability Databases at the HRB:

"In some cases the children have not received a psychological assessment, but parent sensitivity to diagnosis and a policy decision to move towards ‘needs driven’ rather than ‘diagnosis led’ assessment also have a strong influence’.

International research has shown that children who receive the appropriate services early in childhood can have much better outcomes. It is essential that people understand the benefit of early assessment and intervention so the need for treatment can be recorded, acted on and lead to better outcomes for the child,’ she added. ‘It is hoped that the introduction of an independent assessment of need under the Disability Act 2005, which commenced on 1 June 2007 for this age group, will help address this issue in coming year".

Other findings highlighted in the report include:

* The services this age group need most include speech and language therapy, occupational therapy and physiotherapy. There has been a considerable increase in the provision of these services over the past five years, but the demand identified for the period 2008-2012 is high. For example; 912 children received occupational therapy in 2007, 474 children need this service enhanced and an additional 326 children require this service for the first time.
* Most children live at home with their parents (98%) and receive day services. Future demand for residential places for this age group is low, but there is a high level of demand for respite care and home support for families.
* There is a steady decline in the number of children classified as having a mild, moderate, severe or profound intellectual disability. This decline is reflected in the increase in the number of children who did not have their level of intellectual disability confirmed by the age of five.
* Day services provided include special pre-school, early intervention services and mainstream pre-school. The introduction of legislation like the ESPEN Act 2004, which focuses on mainstream education provision for children with special needs, has led to a small reduction in the number of children in special pre-schools and a rise in mainstream pre-schools. This shift is likely to continue in line with policy, which will have implications for the way services develop in the future.

"The findings in this report indicate the need for continued investment and expansion of services for this age group, particularly for services such as speech and language therapy and occupational therapy,’ says Ms Craig. ‘The highest levels of unmet need are linked to provision of home support and respite care and many children already in receipt of day services need a change to their services. This again raises the importance of needs assessment early on for these children early and the development of appropriate services to meet these needs".

The data presented in this press release are based on HRB Trends Series 3: Trends in demand for services among children aged 0-5 years with an intellectual disability, 2003 – 2007, which is available in the publications section of the HRB website at Disability Databases publications.

Actual numbers in the data captured in the National Intellectual Disability Database may be underestimated for three reasons:

1. Registration on the database is voluntary so not all children are included.
2. This age group is under-represented because parents are sometimes reluctant to register their child on a disability database as they are often awaiting a full diagnosis.
3. There is under-representation of children with mild intellectual disability who are in mainstream settings and are not using specialised services through which they could be registered.


Source: Health Research Board (HRB), Ireland.

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