THREE OUT of four children with intellectual disabilities have not had their level of disability confirmed by the age of five, new figures released by the Health Research Board show.
Experts say the reason for the high level of unconfirmed disability is due to children not receiving psychological assessments, or as a result of the sensitivity of parents or experts in providing a diagnosis too early on in a child’s life.
The actual number of unconfirmed cases has risen from 860 in 2003 (or 60 per cent of children with intellectual disabilities under the age of five), to 1,181 in 2007 (75 per cent of such children).
The report also shows that hundreds of children are not getting the vital therapeutic services they need to help them meet their full potential.
Although there has been a considerable increase in the provision of such services in recent years, the report shows that the supply of services is not meeting the demand.
The services most in need among this under-five age group include speech and language therapy, occupational therapy and physiotherapy, the report says.
For example, 912 children received occupational therapy last year. However, a further 326 children who require this service did not receive it, while 474 need an enhancement of their current service.
“International research has shown that children who receive the appropriate services early in childhood can have much better outcomes,” said Sarah Craig, head of the board’s disability database.
“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.”
Ms Craig added that it was hoped the introduction of a mandatory independent assessment of need under the Disability Act 2005 for this age group would help address this issue in coming years.
While the provision of therapeutic services is crucial, the highest levels of unmet services were found to be in the provision of respite and home support services.
Of those already receiving services, high numbers require a change to the day service they currently access. This suggests that more individualised service planning will be required, based on the needs of each child.
The report says investment in and expansion of services for this age group is needed, particularly with regard to the level and range of multidisciplinary support services available.
“This again raises the importance of confirming the level of intellectual disability among these children early on, and developing appropriate services to meet their individual needs,” Ms Craig said.
There are, however, a number of limitations to the data in the report.
Registration on the intellectual disability database is voluntary and, as a result, does not capture the needs of all such children.
In addition, this age group has always been under-represented on the database, due in part to parents’ wishes and not to the lack of a full diagnosis at the earlier stages of the child’s life.
The report also found that the most common forms of day service provided included special pre-school classes, early intervention services and mainstream pre-school.
The introduction of legislation 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, the report notes. This shift is likely to continue in line with policy, which will have implications for the way services develop in the future, it adds.
