Oireachtas Joint and Select Committees
Tuesday, 18 October 2022
Joint Oireachtas Committee on Autism
Autism Policy and Health: Health Service Executive
Professor Malcolm MacLachlan:
In terms of leadership, I am the clinical lead in disability and I guess I am the person responsible in terms of designing clinical programmes.
On what Deputy Tully said about section 39 organisations, I could not agree more. In fact, I raised this at the Joint Committee on Disability Matters. That is something the Joint Committee on Disability Matters could look at because it relates to public sector employment agreements.
In terms of the assessment of needs, that guidance has been developed and signed off by the highest level clinical committee within the HSE. We are obliged to go through the WRC process where we consult unions and make sure they are okay with it. It is hoped that will be complete within the next few weeks.
The Deputy mentioned the previous standard operating procedure. We previously presented evidence that 84% of people who went through the preliminary routine assessment received some sort of intervention. Some of them needed further assessment as well. Essentially, that is gone now anyway because Ms Justice Siobhán Phelan found it was not compliant with the Act.
In terms of what the Deputy says about diagnosis, we are not in any way against the diagnosis. What we are saying is that it is not sufficient to identify a person's needs. For example, in the UK, every year there are 5,000 people who are classified as SWAN, where SWAN stands for syndrome without a name. If one was to require everyone to have a diagnosis to have access to services, those children would never have access to services. More importantly, as the recent literature review I cited emphasises, sometimes an overemphasis on diagnosis can detract from the need to address people's needs and can sometimes misalign resources to diagnostic categories rather than to particular needs of children. However, that is not in any way undermining the importance of diagnosis, both in terms of authenticating people's experience or giving them a sense of identity around their difficulties.