Mr. Adam Harris:

If we take a step back for a second, many of these issues, particularly in regard to the assessment of need process, come back to the question of trust. The systems that are there are not perfect but we know there are ways in which they could be improved or improvements could be explored. The problem, however, is that what we have, we must hold. Whether we are talking about the education system or healthcare, the reality is that the way in which supports have been provided, governed and withdrawn, with people having to battle to get them, means none of the systems have lent themselves to a position whereby people feel any sense of trust in them. That is what makes change so difficult. It would be extremely hard to say we should move away from the right to an assessment because there is nothing there to tell us we should trust the HSE in how it supports autistic people.

That is just a reality. Trust is hard won. We need to see much more significant effort to win that trust. I am concerned that every time there is a setback, such as when we did not get schools to open for people as early as we should have during the pandemic or when it comes to issues such as people's data and how they have been managed over the years, litigation strategies and so on, it really damages trust and sets us so far back. Sometimes we overlook the cultural aspect of this. It actually starts with how bureaucracy interacts with families day to day. Often it is not empathetic or supportive. That in and of itself does a great deal of damage to the ability of the system to operate well. One thing that is definitely true is the lack of joined-up thinking within the system. The HSE will tell us that the supports it delivers are needs-based, not assessment-based. However, in other words, for a child to get a school place he or she needs to have a specific recommendation in his or her report. Indeed, we are told that such paperwork is not necessary to get access to the social protection system, but we find in many instances it is necessary. In fact, we often find that what national policy says and implementation on the ground can vary hugely from postcode to postcode. That in and of itself is a significant challenge we face.

One question we can ask ourselves is whether we are using what we have as well as we could be. So often, even things that we know work are forever kept at pilot stage. If I was to point to one example, I would point to the Middletown Centre for Autism and the fantastic work it does. Services in the North are streets ahead of us in regard to how that resource is maximised. We, for some reason, are still far behind. That is just one example.

Training is at the heart of much of this. The Deputy mentioned autism-proofing. If we can just go to mental health for a second, I have been amazed when I interact with mental health professionals at just how low the level of knowledge is sometimes. We know there are people who need very bespoke mental health supports from a very experienced practitioner while others simply need reasonable accommodations, but the lack of training means people very quickly get into the space of “I cannot see autistic people”, not realising the diversity and individuality of what we are talking about. We need to look at a universal training programme. One good thing we have seen in the UK is the Oliver McGowan training programme where now all NHS staff, by law, have to have training in autism. That is very important because we know, for example, when people are critically ill, if those treating them do not know the differences around autism, that can lead to tragedies, as has happened, and that has led to the mandatory training. Also, over time, it will take the fear factor out and make people a little more open to being flexible in their thinking.

The final point is I completely agree on the employment piece. That links back to this sense of a lifelong plan. I would like to see a starting point where we even have education plans for everyone. We do not, let alone transition plans. A concern is, and it strikes me as extraordinary, that it seems the Department of Education funds supports and is facilitating inclusion for many autistic people in the education system, but after 14 years, if a person is not going to college, the assumption is he or she will go to a day service rather than being how he or she can get a job and participate in the community and how we can support him or her to do that. I hope I somehow answered-----