Denis Naughten (Roscommon-Galway, Independent) | Oireachtas source

The purpose of the Bill is to address the inconsistency that exists throughout the State in respect of both the availability and type of services that are accessible to autistic children and adults through the implementation of a cross-departmental, multi-agency autism strategy. No strategy has been put in place in Ireland since the European Commission approved the charter of rights for people with autism in 1996. The charter states autistic people should have the same rights as those enjoyed by all EU citizens and their rights should be enforced by legislation. This has yet to happen in Ireland after a quarter of a century. The Bill seeks to do that by providing for the development and implementation of a cross-departmental, multi-agency strategy to provide and implement services for all autistic people. As the Minister is aware, a motion was passed in Dáil Éireann, with strong cross-party support, for the establishment of an all-party Oireachtas committee that would be mandated to produce an autism strategy for Ireland within six months. This too has yet to happen.

Autism is complex and two of the greatest battles parents of autistic children face relate to first getting a diagnosis and then, after that long and tortuous diagnosis struggle, the inaccessibility of regular supports. These battles contribute to the regression of autistic children's interpersonal education and skills, which has been compounded by the current pandemic. It is the same story across the board for parents, where issues begin to arise only when the child begins preschool or primary school.

I am dealing with the case of Mary and her son David, who is in fourth class. They have had to go private to secure a diagnosis because of the current waiting list for CAMHS referral and occupational therapy, OT, and educational psychological assessments. They have been forced to go down this road, borrowing from grandparents, because David would be in secondary school before he would get access to any of the appointments in the current public system due to the horrendous waiting lists. Now, after forking out for a private educational assessment, the family find themselves in the position of having to make up the grant shortfall of €800 for assistive technology because the Department of Education will fund only a basic laptop and not the specific laptop recommended by the educational psychologist to meet David's needs. This is before the family begin to consider the additional cost of equipment required for various therapies that can assist David.

His mum has been advised he is likely to need physiotherapy in a couple of years to assist him with his condition. Given the current waiting lists, this means that, ideally, he needs to be placed on a waiting list now in a pre-emptive move to ensure he can access such services when he needs them. David has qualified for the incapacitated child tax credit, yet his mother has been refused the domiciliary care allowance. How can we say, on the one hand, that a child is incapacitated but that he does not require additional attention from another Department beyond that of a child of a similar age on the other?

The financial pressure placed on this family, or any other family in a full-time caring role, is horrendous. A recent study from National University of Ireland Galway found the average annual cost for families of an autistic child amounted to more than €28,000, relating to private services, lost income and informal care. What about children whose grandparents are not in a position to pay for such interventions? They are at the mercy of the ever-growing public waiting lists. The State is failing in its obligation to provide the early intervention and support these children urgently need. Surely it makes more sense to invest in our children early in order that they can reach their full potential and actively contribute to our society and tax system in future. This can happen only if the correct supports are put in place as early as possible rather than if we fail to meet their needs and, potentially, be forced to support them through the social welfare system into adulthood.

The Regional Group has restored this Bill and intends to make numerous amendments to it on Committee Stage, especially in regard to the terminology within its current draft. It was introduced initially by the then Senator James Reilly, the former Minister for Health, and passed all Stages in the Seanad but fell due to the dissolution of the Dáil in January 2020. Our group's members look forward to working with all Oireachtas parties and stakeholders to ensure this legislation will be fit for purpose and successful. It will be a game changer for autistic people as it will enshrine their rights in law.

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