Ms Sin?ad Gibney:

The example relating to CAMHS is one of the data being an issue. The denial of service to autistic people, regardless of whether it is defined by law as discriminatory, is a failure of the data to capture the different categories of people with disabilities and the different types of disabilities that people have. For example, I only learned in preparation for today's meeting that there is no capacity for people to identify as autistic on the census form. There are different categories that people end up choosing because they are as close as they can get, around mental health and intellectual difficulties, but there is no category for autism. That is another example where the data collection issue is evident. It is the same in something like CAMHS where there is a broader definition of disability without the ability to specifically include autistic people.

On the question of nothing about us without us, Senator Flynn is speaking our language. It is really about putting people at the heart of policy. Dr. McDonagh is the chair of our disability advisory committee. That is a structure we put in place as the independent monitoring mechanism. I want to be clear that the fact we as the independent monitoring mechanism have done so does not mean the State should not place similar structures within state infrastructure to capture the voice of people with disabilities and autistic people. It has been such an enriching forum for our organisation to have this group of people, all with lived experience of disability, who advise and guide our work on disability. I do not know exactly how that happens but I encourage the Houses of the Oireachtas and the Government to consider how that can be better embedded.

One other point around the voice of people is to be careful around the balance between the voice of people with disabilities versus the voice of those around them. Families and carers have a contribution to make in the shaping of policy and law regarding people with disabilities but the most prominent voices must be those of children and adults who are autistic and who have disabilities. The same applies to the question on how to implement policy. Since the early 2000s, we have seen that the autistic community has flourished but policy has not. I will go back to my comment that although it is probably uncomfortable listening for a group of legislators, all legislation and policy must be disability-proofed and autism-proofed. It must be human rights and equality proofed.

We have a function as the national human rights and equality body to review and comment on legislation. We have a finite capacity so every term we have to select from the legislative calendar which pieces we will prioritise. I encourage members to look at the submissions on the development of legislation and policy from ourselves, our colleagues in the room today and broader civil society promoting human rights, equality and the advancement of disability rights and rights for autistic people. It is a real, concrete way in which legislators can start to understand and really embed these principles.