The other night I attended a meeting organised by the Down's Syndrome Centre which highlighted an issue of which I had been aware, although I had not fully appreciated the hurt it was causing. An educational assessment for a child suffering from Down's syndrome is provided at around the age of six years and assessments fall into four categories, "mild", "moderate", "severe" and "profound". Educational provision for the child is then designed and delivered on the basis of the outcome of the assessment. A development going back a number of years but which only is coming to light now is that children who are designated with mild Down's syndrome, that is, those who are least affected by the genetic disability, are being deemed as fit to enter into mainstream education. Although they are provided with special needs assistance in that system, they are not being given the kind of resourcing or educational expertise required to meet their needs. This need and the right to its being addressed are underpinned by section 7 of the Education Act 1998 which commits the State to providing education as appropriate to the needs of the young person being educated. In this case, I refer to children with a baseline disability from which it is obvious they will never recover but with which they will live throughout their lives. The fact that their IQ might be deemed to be greater than 70 does not take away from Down's syndrome being a baseline disability in the same way as is autism.
Autistic children are not deemed to be either eligible or ineligible for special education based on their IQ. If a child is deemed to be autistic, that baseline condition is recognised and educational delivery happens according to need as is consistent with the Act. This is not the case with many Down's syndrome children. In a sense, the making of real progress has underlined my point. The work of early intervention teams and of parents with children from a very young age means that increasing numbers of Down's syndrome children who come for assessment now cross that threshold and are deemed to have mild Down's syndrome rather than being categorised as being moderate, severe or profound. Consequently, an increasing cohort is being categorised as being mild and because the educational needs of that cohort are perceived as being deliverable through the mainstream system, albeit with additionalities, these children are not being recognised as having a baseline condition and are not really receiving the educational delivery appropriate to their needs.
At a recent meeting on the subject, I heard some extraordinary stories in which parents spoke of keeping their children awake all night in order that they would underperform at the assessment. Another parent spoke of his unwillingness to allow his child to be assessed, of withdrawing from the process and making it unmanageable or unworkable. Contributions such as these were being made to the debate I attended the other evening and I found it to be quite disturbing that people would be so agitated that they would take such actions in the knowledge that it would have consequences for their children, who effectively would be kept at home, and for themselves. There is an undercurrent of deep dissatisfaction and a sense in which the State is not facing up to its obligations under the Act. There also was a recognition that resources are scarce and this may be a decision based on resourcing. That should not be a reason for the State to resile from its commitments under the aforementioned section of the Act.
I welcome the opportunity to make these points on the Adjournment and look forward to hearing the Minister of State's response. It is critical that whatever else the response may contain, the baseline nature of this condition and its unchanging nature should be paramount, not whether someone crosses an IQ threshold.
