Peter Fitzpatrick (Louth, Independent) | Oireachtas source

I very much welcome the opportunity to speak on this very important issue. I, along with my colleagues, will support the Bill and will support its progress on Second Stage today. Autism is not a health issue. It is a human rights issue. It is very clear that no clear strategy has been in place here since the European Commission approved the charter of rights for persons with autism in 1996. This charter was very clear and stated autistic people should have the same rights enjoyed by all EU citizens and that those rights should be enforced by legislation. Twenty-five years have passed and Ireland has yet to introduce legislation in this respect. This is shameful and should be rectified immediately.

The Bill before us seeks to provide for the development and implementation of a cross-departmental multi-agency strategy to provide and implement services for autistic people. It is clear that understanding autism is crucial to the success of the Bill and any strategy that follow it. Let us be clear. Service provision for autistic people should never be discretionary. It should be a human right protected under legislation. As I have said, it has been 25 years since the European Commission approved the charter of rights for people with autism and Ireland still has not yet introduced legislation to this effect.

It is clear that if we keep going forward with no change, it will cost more in the long run. This is simply not an option. We must act now. When an autistic child does not get regular access to supports, as was the case during the pandemic, he or she will simply regress.

On top of this, the financial strain felt by families is only enhanced. Existing social welfare payments are simply not enough for those families to cover the cost of therapy and additional supports. A recent study from National University of Ireland Galway found the average annual cost per child for families amounts to more than €28,000 and relates to private services, lost income and informal care. I work with many families in my constituency office in Dundalk who are trying to cope. One of the greatest challenges parents face relates to getting regular support and help. Looking after a child with autism is a full-time job. Parents need support. Many are trying to hold down full-time jobs and provide for their autistic child. One of the greatest challenges they face is when the child progresses from primary to secondary school. This is often a traumatic time for the child, who is moving into a completely different environment and, quite often, will not get the one-to-one support he or she received in primary school. More needs to be done at this stage. The move from primary to secondary school can be life-changing for these children. I would like to hear other Deputies' views on this. We need to engage with front-line staff and parents to find out exactly what needs to be done at this critical stage in a child's life.

As the child grows older, he or she will again face many challenges when leaving secondary school, whether entering third level or even the workplace. Again, the supports are not readily available at this stage in the child's development. We have made great strides in recent times in the area of autism. We are getting to the stage where there is no longer any stigma around autism. It is accepted it is a condition that needs treatment and support and that those with autism can lead normal lives once they get that necessary help and support.

I am sure the Minister, like me and other Deputies in the Chamber, will have met plenty of people in his constituency office seeking help for their child. They cannot afford to spend two or three years on a waiting list or to pay for private assessment. All we want is the best for our children. Families who have approached me have had no option but to seek loans. They go to the banks and credit unions and, as a last resort, to loan sharks. That is how bad the issue has become. I have even by contacted by a family who took their child to Poland to have the child assessed. That is not acceptable.

Along with the other members of the Regional Group, I intend to support and progress the Bill through Second Stage. We look forward to working with all Oireachtas parties and stakeholders to ensure the legislation will be fit for purpose and, ultimately, successful. It will be a game changer for autistic people and will enshrine their rights in law once and for all.

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