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Dail Éireann · 2024-07-04

Disability Services

IND Thomas Pringle · Donegal

Party shown is the one held on 2024-07-04, frozen at parse time — not the speaker's party today.

Summary of this debate

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While there are no statistics in Ireland, the agencies are working with FASD and recognising FASD as a problem that needs to be addressed. I know from talking to FASD Ireland that in some areas, staff trying to deal with very difficult children are asking them to help but the State organisations themselves are not recognising FASD.

FASD sufferers have comorbidities that are more recognised, and the treatments for those comorbidities can be counterproductive for FASD sufferers. FASD Ireland was established in September 2021 with three core aims: to raise awareness of FASD, to reduce the prevalence of FASD, and to support people living with FASD.

Built by scoring every sentence in the debate on how distinctive its language is, then quoting the highest-scoring ones back word for word and in the order spoken. Nothing is paraphrased or invented — if a sentence appears here, it was said in the chamber. Drawn from 983 words across 25 contributions by 6 speakers.

Most used terms in this debate

How often each word appears across the whole debate, ranked by how distinctive it is to this debate rather than common to all parliamentary language.

fasd 39
foetal 8
alcohol 11
sufferers 5
minister 24
topical 7
state 20
deputy 21
ireland 15
living 10
rabbitte 5
spectrum 5

The full debate

All 25 contributions, start to finish, in the order they were made. The one you came here for is highlighted.

CC Seán Ó Fearghaíl

The Minister of State, Deputy Ossian Smyth, is here to deal with Topical Issues. He is very welcome. Our first Topical Issue comes from Deputy Thomas Pringle, who wishes to discuss a foetal alcohol project to be undertaken with a multicare sector approach.

IND Thomas Pringle this contribution

I thank the Ceann Comhairle. Is the Minister of State, Deputy Smyth, taking this Topical Issue as well? Is he taking them all?

CC Seán Ó Fearghaíl

Is the Minister of State taking them all?

GP Ossian Smyth

I am taking two.

LAB Ged Nash

The Minister, Deputy Peter Burke, is coming in as well.

IND Thomas Pringle

No offence to the Minister of State, Deputy Smyth, but I understood that Topical Issues were supposed to be taken by the relevant Minister. As far as I understand it, he is a Minister of State at the Department of public expenditure, and this is the responsibility of the Department of Rural and Community Development. It is disappointing but I know that is the way Topical Issues have developed over the last-----

CC Seán Ó Fearghaíl

Let us be clear. I want to be helpful to the Deputy. What should be happening is where a Topical Issue is selected and the Department is notified, the Department should be notifying the Deputy as to whether the Minister to deal with it is the Minister from the relevant Department.

IND Thomas Pringle

It did not do that.

FF Éamon Ó Cuív

It is not happening a lot of the time.

IND Thomas Pringle

It has never happened.

FF Éamon Ó Cuív

When you raise the issue under a Standing Order - I am not sure of the exact Standing Order but the Ceann Comhairle will know which one - the Deputy then has an option that a lot of Deputies do not seem to be aware of.

CC Seán Ó Fearghaíl

To defer, or-----

FF Éamon Ó Cuív

They can either take it, or have it deferred one day and have it taken by a Minister from that Department. Of course, that does not work if you are not told beforehand.

CC Seán Ó Fearghaíl

I will have to call on the Government Chief Whip to examine the matter because procedurally, we are not acting properly, nor ignoring-----

GP Ossian Smyth

Is Deputy Ó Cuív happy for me to answer his question?

CC Seán Ó Fearghaíl

I think Deputy Pringle is.

IND Thomas Pringle

I have prepared for this to be taken today. Had I been aware, I would have deferred, as I wanted the Minister to be here. Basically, we are talking to the ether anyway.

CC Seán Ó Fearghaíl

I came in here to chair this and I am not aware of what the situation is until somebody tells me. The Deputy is telling me now, and I am telling him what the procedure is. Deputy Ó Cuív has pointed it out.

IND Thomas Pringle

How are we supposed to know when there was no communication? I assumed the Minister was going to be here to take the Topical Issue. We cannot be charged with going around-----

CC Seán Ó Fearghaíl

I do not expect the Deputy to be divinely inspired.

FG Fergus O'Dowd

Not yet.

IND Thomas Pringle

Not yet, no. I will wait until I go over that side, and then we will do it.

As the Minister of State knows, FASD - and he might not know of it but I will talk to it anyway - is foetal alcohol spectrum disorder. It is an underrecognised condition in Ireland. Compared to other jurisdictions like Canada and New Zealand, we are way behind in dealing with it and providing funding and support for sufferers and their families. There are estimates that between 4.75% and 7.2% of the population in Ireland is living with FASD. The problem is, bizarrely, that we do not know for sure because there have been no studies or research carried out here. That is the crux of the issue of why we are here.

While there are no statistics in Ireland, the agencies are working with FASD and recognising FASD as a problem that needs to be addressed. I know from talking to FASD Ireland that in some areas, staff trying to deal with very difficult children are asking them to help but the State organisations themselves are not recognising FASD. This is leading to children being left behind; children who could have more productive lives if the State was able to assist them properly. Schoolgoing children may have learning difficulties because they can find it difficult to plan, organise themselves or understand the consequences of their actions. They will have challenges such as inattention, hyperactivity, anxiety and frustration.

An individual with FASD who does not have the correct support in place can experience many challenges throughout his or her life as well. These generally develop during adolescence but can develop earlier. Such people can experience difficulties with peers, inappropriate sexual behaviour, involvement in crime, poor mental health, alcohol and drug misuse and challenges with independent living. Individuals with FASD are 19 times more likely to encounter the judicial system than a neurotypical person. That is according to a doctor and researcher at the University of Salford in the UK, Dr. David Gilbert.

I have seen some estimates that up to 30% of individuals who are in prison are sufferers of FASD. In Ireland, it is considered that this could be an even higher percentage but the reality is we do not know because we have not researched it. Recognising the condition and treating it could save the State huge amounts of funding for vital and scarce public services, so even from a bean counter's point of view it would make sense. Likewise, we do not know the prevalence throughout all our systems of health and education because we have not recognised the existence of FASD.

FASD sufferers have comorbidities that are more recognised, and the treatments for those comorbidities can be counterproductive for FASD sufferers. A treatment that works for ADHD, for example, could have an opposite effect on an FASD sufferer, and not being recognised, they may fall through the cracks with regard to getting adequate treatment. It could be looked at that they are not responsive but if FASD was treated rather than the comorbidity, that could have a significant alternate effect and mean a better quality of life for the patient.

I know that there has been an allocation to FASD Ireland in the Department of Health budget for this year but that has not made its way to FASD Ireland yet and we are almost two thirds of the way through the year at this stage. That is worrying because in order to plan for next year, studies have to be started and that needs to happen quickly. As the Minister of State knows, it is about providing the evidence base so we could have a funding allocation that would allow support to be put in place. Rightly, Government money cannot be spent on something that perhaps cannot be proven to work. I believe that it will be proved necessary and if the sufferers and their families are supported, the future will look better for everybody.

GP Ossian Smyth

I thank Deputy Pringle for raising this issue. My colleague, the Minister of State with responsibility for disabilities, Deputy Anne Rabbitte, remains committed to the continued development and enhancement of our disability services through the implementation of both the HSE’s progressing disability services, PDS, roadmap for service improvement from 2023 to 2026 and the Department’s action plan for disability services from 2024 to 2026.

As the Deputy will be aware, foetal alcohol spectrum disorder is a prevalent yet preventable neurodevelopmental condition. It is a group of disorders caused by prenatal alcohol exposure and it 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 estimate the prevalence of FASD in Ireland is between 2.8% and 7.4% of the population. An estimated 600 babies are born each year with foetal alcohol syndrome, with a further nine to ten times this number of babies born annually with other foetal alcohol spectrum disorders, FASDs. Only a small proportion of children with FASD have visible facial dysmorphia. The majority of children with FASD have no visible signs of disability at birth, and difficulties may not manifest until preschool or school age. Currently, there are no standard diagnostic policies or guidelines for diagnosing or treating children with FASD in Ireland.

FASD Ireland was established in September 2021 with three core aims: to raise awareness of FASD, to reduce the prevalence of FASD, and to support people living with FASD. The Minister of State, Deputy Rabbitte, was pleased to endorse the launch of the FASD Hub Ireland in March 2023. This important support service provides a national telephone helpline operating Monday to Friday evening between 10 a.m. and 4 p.m. for anyone who lives with FASD, anyone who cares for someone living with FASD, and anyone who works with someone living with the condition

The HSE has recommended that a number of actions are implemented to prevent FASD. Many of these actions are currently being progressed, and some new actions are proposed that will require resourcing, such as the development of a national strategy on FASD prevention and response. The Minister of State was pleased to secure ring-fenced funding of €3 million in budget 2024 for targeted services for children, which will allow a number of projects to be progressed in line with the HSE approval process. The HSE has confirmed that €200,000 is being made available to the HSE’s regional executive officer, REO, in the mid-west, in order for FASD Ireland to support an action in the HSE 2024 service plan to deliver a foetal alcohol project using a multicare health sector approach, that is, primary care, mental health services and so on.

The Minister of State, Deputy Rabbitte, has met FASD Ireland and can confirm that the regional executive officer will make arrangements for a grant agreement with the organisation. I wish to assure the House that the Minister of State and officials in her Department are committed to working with colleagues in the Department of Health, alongside other stakeholders, to ensure that the issue of foetal alcohol spectrum disorder is considered a priority and to see that services are delivered in an appropriate manner.

IND Thomas Pringle

I thank the Minister of State. The Minister of State, Deputy Rabbitte, has outlined in her response that funding has been allocated, that the FASD Hub Ireland was established in March 2023, and it operates from Monday to Friday between 10 a.m. and 4 p.m. for anyone who lives with FASD. That is welcome but there is no funding provided for that.

The funding has not actually reached FASD Ireland yet to pay for that. It is operating the service but it is doing so with a loan from the bank because it is waiting for funding to come forward from the Government. It will be July or August at the earliest before funding makes its way to it. That is slack. It will not lead to putting the treatment on a good footing. Part of that funding has to provide for studies to be carried out but they will not be carried out in time for next year's application, so that time will be lost too. During this time, children will be lost. Children and families are living with this condition and cannot deal with it. They will lose out. We need to get moving on it quickly. I would like Deputy Smyth to pass that on to the Minister of State, Deputy Rabbitte, so she is aware of it and makes sure that funding gets there in a timely fashion.

GP Ossian Smyth

I will pass the Deputy's comments on to the Minister of State. She in turn will continue with the Department and the HSE to advance progress on the provision of services for those living with foetal alcohol spectrum disorder and their families. To this end, I am happy to report that a cross-departmental working group will be established to develop a long-term and sustainable plan that will provide access to appropriate services for those living with FASD and their families. The Minister of State wishes to reiterate her full commitment and that of her Department and the HSE to ensuring that the issue of FASD receives the attention that it deserves and that we endeavour as a Government to provide the level of services required by those living with FASD.