Dr. Karen McAuley:

I thank the Deputy for her questions. As regards the Disability Act, as the committee will be aware, one of the core recommendations in our Unmet Needs report, published in 2020, which focused on assessment of need, was that a review of the Disability Act should be undertaken. In the context of our remit and the focus of that report, the recommendation was focused on the provisions in the Disability Act relating to children. We are aware of the legitimate concerns that a prospective review might result in a dilution of existing entitlements relating to assessment of need. Our view is that there are different ways one could approach a review but the key thing would be to have it undertaken by an independent expert group with clear terms of reference as to the purpose of the review and the clear aim of ensuring the Disability Act is fully compliant in terms of being underpinned by a human rights-based approach, and a child rights-based approach in respect of children. More generally, our sense is that given that Ireland ratified the UNCRPD in 2018 and a review of the Disability Act has not been undertaken for a long time, such a review would be timely. We were very disappointed to hear when the State met with the UN Committee on the Rights of the Child in January that it has no plans to review the Disability Act. It is notable that one of the recommendations made by the Committee on the Rights of the Child in its concluding observations which were published last Thursday is that the Disability Act, together with the EPSEN Act and the equality Acts, which are under review anyway, should all be reviewed with a view to providing in law for a rights-based approach that upholds the rights of persons, including children, with disabilities.

In the context of assessments of need, we welcome the work that is now being undertaken by the HSE and look forward to the outcome in terms of developing a roadmap, clinical guidance and a protocol for mapping a way forward for an alternative approach to assessment of need to meet the exigencies of now. There is, however, a need to address the fact that we do not have the resources in place to provide children with the assessments and services they need in a timely manner. That is a real challenge, one that cannot be addressed overnight. I know all members of the committee are familiar with that. One of the things we would like the HSE to do, in addition to planning for now and the short term, is to participate in long-term scenario planning. One of the things that concerns us is that the exigencies of now have created a narrative in broad terms which is about assessment versus services. Assessments are being provided, albeit in a very delayed manner, at the expense of providing services. In an optimal scenario where all the resources needed were in place, it is possible that debate would not be happening. We would like to see long-term scenario planning and a clear vision being set out as to what good would look like if all the necessaries were in place. We do not know what good looks like. It is worth bearing in mind in terms of both how we legislate, including, ideally, through a review of the Disability Act, and how we plan, that we need to be ambitious with and for children, including autistic children.