Ms Ruth Gilhool:

We thank the Joint Committee on Health for its invitation this morning. My name is Ruth Gilhool and I am joined by Margaret Lennon. We are two of the co-founders and administrative staff of the DCA Warriors group. We currently represent almost 20,000 parents who have children with special needs and-or serious illness. Our main issues with the new standard operating procedure for assessment of need are the lack of consultation and the failure to inform parents of the changes in this procedure. The full text of the SOP was not available online at the time of writing, and it has been in operation for some time already. Parents should be fully informed of matters affecting their children's health and well-being, in particular if their needs are complex.

The following is a quote from Dr. Rita Honan, clinical psychologist. "Diagnosis is the gateway to treatment and the subsequent reduction of symptoms and increased cognitive and adaptive functioning for the majority of children on the autism spectrum. Every day this is delayed leads to missed learning opportunities."

In particular we have an issue with the initial screening process, which consists of an overly complicated application form, additional information sought by phone, and then a preliminary team assessment of no more than 90 minutes. We do not consider that to be a sufficient amount of time to make a determination of disability in a child. Correct assessment and diagnosis is vital for parents in order to be able to effectively advocate for their child. Under the Constitution, parents are the primary educators of the child, and with complex health and educational needs, it is essential that these needs are determined under clinical best practice standards. A lack of diagnosis hinders intervention which has an impact on health, mental health and education.

Without significant investment in staffing numbers, the new primary team assessment, PTA, will pull clinicians away from their positions in early intervention teams, EIT, the school age disability teams, SADT, and primary care teams, in order to carry out screening as part of PTA. This will result a delay to intervention and lengthening waiting lists for these services, which is already over four years in some areas, exacerbated by children subsequently being referred onto these lists after the screening process.

This process moves children effectively from the waiting list for assessment of need, which has a statutory timeframe attached to it, to the waiting lists of the disability network team, early intervention team or school age team, which do not have a statutory timeframe. These lists are already lengthy, with waiting lists of up to four years being operated in some parts of the country.

Not having timely full assessment and diagnosis, where warranted, of a child's needs, puts a child at a distinct disadvantage when it comes to having his or her health and educational needs met, with knock-on effects into the applications for school supports, specialised school placements, ASD preschool, home tuition and higher education. We have outlined these effects in the briefing document we supplied to the committee.

Early intervention is crucial for those with milder initial presentations and those who are more severely affected. An investment in early intervention can save a significant amount of money in the long run, not to mention the improvement in quality of life of the child and his or her family. If appropriate supports cannot be accessed due to a child being on a lengthy waiting list, the knock-on effects, especially in the area of mental health, are in some cases catastrophic, and we see examples of this among our members on a daily basis. The proposed approach by the HSE is shortsighted and pushes problems down the line, where they will be more severe and costly to resolve for both the families and the State.

We request the Joint Committee on Health to write to the Minister for Health with its report. It was an oversight on our part that this was not included in our opening statement. We thank the committee for the invitation and giving its time. We invite any questions, which Margaret Lennon will be happy to answer.