Violet-Anne Wynne (Clare, Independent)
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At the outset I want to acknowledge and congratulate the amazing team at FASD Ireland on its fantastic work and for reaching the recent milestone of the first anniversary of the FASD hub national helpline, which allowed it to provide support to more than 800 people living with foetal alcohol spectrum disorder, their families, and professionals across the State. I also acknowledge the commitment of the Minister of State, Deputy Rabbitte, to FASD Ireland. She has worked closely with the organisation and has made it her business to support it. She visited County Clare to meet its representatives on a number of occasions, which is to be commended.

Foetal alcohol spectrum disorder, known as FASD, is Ireland's silent epidemic and is caused by prenatal alcohol exposure. FASD is lifelong brain damage for which there is no cure or treatment and according to the Journal of the American Medical Association in 2017, Ireland has the third highest prevalence of people living with FASD in the world at 4.75%, behind Croatia at 5.3% and South Africa at 11.1%. This is the most credible report carried out to date and one that has been referred to many times in Ireland since publication. There has not yet been an Ireland-specific prevalence survey to verify these numbers since that report seven years ago. However, following the two years of Covid-19 lockdown, in September 2022 the HSE alcohol and mental health and well-being programme announced that the prevalence of FASD may have increased to as high as 7.4% of the population, which would equate to around 379,000 living with FASD in Ireland today.

Astonishingly, most people in Ireland are not even aware of what FASD is and only 1% of those living with the condition in Ireland have been able to obtain a diagnosis, for which they had to go overseas. Alarmingly, Ireland is the only country in the developed world that does not recognise FASD as a neurodevelopmental disability. The HSE does not currently have any statutory guidelines for diagnosis, there are no specialist clinicians or diagnosis pathway and few support services for people living with the condition. FASD Ireland, which is based in my own constituency of Clare, is a national organisation providing essential support, advocacy and education to those living with foetal alcohol spectrum disorder, their families, and professionals. We know from recent research by Dr. Katy Tobin at Trinity College Dublin that 25% of young people living with FASD in Ireland left formal education at the age of 14. That dreadful statistic could be considered a contributory factor and it informs the latest research from Dr. David Junior Gilbert of Salford University who found that people living with FASD are 19 times more likely to be involved with the criminal justice system in comparison to individuals without FASD.

That number is stark. Tusla recognises that up to two thirds of care-experienced children live with FASD and consequentially most will need supported living or face extreme challenges after leaving care. Children's disability network teams and CAMHS currently do not have statutory guidelines or the clinical experience to diagnose FASD. They are trying their best, providing revolving door support for comorbid conditions for the many children and young adults living with FASD. In addition, tragically, CAMHS supports terminate for these young people upon reaching the age of 18, with no handover to adult mental health services, as FASD is neither recognised nor supported by the service.

I am aware of the publication of the HSE national service plan which, on page 38, mentions that a foetal alcohol project will be undertaken using a multi-healthcare sector approach. The Minister of State acknowledged this in the Chamber in March, in response to the motion on supporting people with disabilities and carers. Will she outline what her Department intends to do to ensure FASD is a recognised disability in Ireland?

Anne Rabbitte (Galway East, Fianna Fail)
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I thank the Deputy for raising this important issue for discussion and the Leas-Cheann Comhairle for its having been selected. As Minister of State with responsibility for disabilities, I am fully committed to the continued development and enhancement of our disability services, through the implementation of my Department’s Action Plan for Disability Services 2024-2026. As the Deputy will be aware, foetal alcohol spectrum disorder is a preventable neurodevelopmental condition. It is a group of disorders caused by prenatal alcohol exposure and is associated with a range of lifelong physical, mental, educational, social and behavioural difficulties. FASD is caused by the consumption of alcohol at any time from six weeks before conception, by either parent, until the baby is born.

Many people do not know or recognise that they are living with FASD. The most recent available figures from the HSE, to which the Deputy alluded, estimate the prevalence of FASD in Ireland is between 2.8 and 7.4% of the population. An estimated 600 Irish babies are born each year with foetal alcohol syndrome. The majority of children with FASD have no visible issues at birth, and difficulties may not manifest until preschool age. Currently, there are no standard diagnostic policies or guidelines for diagnosing or treating children with FASD in Ireland.

In line with the HSE’s mainstream first approach to the delivery of healthcare, such measures, supports and campaigns are led across the country by the HSE’s health and well-being division, under the remit of the Department of Health and overseen by the HSE clinical lead for FASD prevention. The HSE has recommended that a number of actions are implemented to prevent FASD. Many of these actions are being progressed and some new actions are proposed that will require resourcing, such as the development of a national strategy for FASD prevention and response in Ireland.

While the Department of Health oversees policy development and direction for FASD, within own Department I was pleased to secure funding in budget 2024 for a foetal alcohol project which will be undertaken using a multi-care health sector approach, including disability services, primary care and mental health services. The Deputy alluded to the fact that FASD is not just a health or disability issue but is actually cross-departmental. There is also a justice piece and an education piece. This is one of a number of targeted services for children which will be progressed in line with the HSE approval process. I assure the House that my officials and I are committed to working with colleagues in the Department, alongside other stakeholders, to ensure that the issue of foetal alcohol spectrum disorder is considered a priority.

I think the Deputy referred to page 38 of the HSE service plan. She is right that FASD is mentioned there. It is regrettable that to date FASD Ireland has not received a letter to confirm how much funding it will receive. Approximately €200,000 in funding will be awarded to the team in Clare for the national hub. I commend the work it has done in putting in place the telephone line and supporting families when there is such a deficit in Departments and the HSE in terms of taking on the mantle of providing support. I compliment the team in Clare on what it is doing. I am very supportive of it. There is a tug of love within the Departments as to where FASD really sits. I have taken ownership of it but, at the same time, there is a role for the HSE and we acknowledge that it sits with it.

Violet-Anne Wynne (Clare, Independent)
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I thank the Minister of State for her detailed response and for specifically mentioning prevention. That is really important and I may come back to it. It is also very positive that there is commitment to fund FASD Ireland to continue the important work it is doing. I know the Minister of State has taken it under her wing because the organisation has fallen between the cracks, so to speak. It greatly appreciates that, as do I. It has ensured great positivity and the continuation of FASD Ireland's work.

FASD Ireland runs training courses that have proved to be extremely popular. It pilots a 40-minute FASD awareness class to transition year students. When we are talking about prevention, that is a very good option for getting information out to those who need it. This public health message needs to be nationally rolled out. In respect of that awareness class, three months after the training course when students were asked about their awareness of FASD, 93% had a great level of understanding. That was a great success and points to a need for these courses to be rolled out nationally. I know FASD Ireland is eager for the Department of Education to work with it.

FASD Ireland also wants Tusla to engage on a national basis. It has delivered training to Tusla at local level but would like to roll that out nationally. This work is also vital. The Minister of State mentioned current issues around FASD in Ireland. We need a pathway for diagnosis and for FASD to be recognised as a disability. That has to be a priority. The Minister of State pointed to a huge job of work that needs to be done by all Departments. I am hoping the Taoiseach's recent announcement of a Cabinet committee on disability might see that being explored further. I hope FASD will be included in its programme of work and that FASD Ireland will be able to engage with the committee. Most importantly, the Government needs to continue to hear from those who are impacted directly and from FASD Ireland in particular.

Anne Rabbitte (Galway East, Fianna Fail)
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I will continue, with the Department of Health and the HSE, to advance progress on the provision of services for those living with foetal alcohol spectrum disorder. I am also conscious, listening to the Deputy's contribution, that a lot of other agencies lean on the hub in Clare for support, including Tusla in Clare and a lot of other counties. I completely agree with the Deputy that the training the FASD Ireland provides needs to be rolled out and scaled to the front line of some of our organisations, including Tusla but also in education and primary care. I am not saying we should diagnose but we should be conscious of the signs professionals can signpost correctly within their fields, so there is an understanding and a pathway there to support parents and people on the front line.

I mentioned the likes of Tusla leaning on the FASD hub in Clare. It is amazing that it does not pay for the service. The hub in Clare, believe it or not, provides hidden disability lanyards as a source of income to support its operations. When I talk about this tug of responsibility, I genuinely see it as a disability piece.

The Department of Health has an awareness and prevention role in this but there is a diagnostic and clear pathways piece. There is an upcoming strategy on disability. I know the team participated in one of the roundtable meetings. There is a clear pathway for engagement and for having FASD signposted in the strategy.