Dr. Eilionóir Flynn:

I will start and if Ms de Bhailís has more to add, I will ask her to do so. I gave an example earlier of requiring people to create two instruments instead of one, namely, an enduring power of attorney and an advanced healthcare directive. If the person wanted to designate the same person with responsibility with carrying out their wishes in respect of health treatment, it seems unfair for them to have to create two instruments to achieve that. I appreciate the intention was not to make it more difficult but to have clarity from the perspective of those viewing the different instruments; however, the unintended consequence may be to make it more difficult for the people creating the instruments, rather than those reviewing them or trying to determine their applicability. If the concern was about making sure someone who holds an enduring power of attorney can fully give effect to the person's will and preferences, including stopping life-sustaining treatment where the person wishes to give that power, a better way to achieve it would be to amend the provisions on enduring powers of attorney to clarify that if a person gives that explicit power to individuals, under that enduring power of attorney they are free to carry out their wishes.

Some of the challenges relating to bureaucratisation of the support that emerge from this process are at the intersection of the amendment Bill and some interpretations of the Act emerging in the draft codes of practice developed by the decision-support service, which are currently out for consultation. An area we are concerned about is the proposal to have an online registration of various agreements. Due to the digital divide, which is a serious issue for many disabled and older people, the requirement to have things like a MyGovID will make it difficult and inaccessible for many people and it will be a process that people feel they cannot engage with and they will give up at the first hurdle. Though that is not the intention, it is an unintended consequence that needs to be given greater attention. Having more engagement with the organisations controlled by disabled and older people and people with experience of mental health services would have perhaps led us to avoid this problem because those groups would have been able to say quickly that this would not work for many people.

It is important that there be a full process of ongoing engagement, not just in the progression of this legislation and development of the codes of practice the DSS is working on, but in the ongoing implementation, review and monitoring of this legislation at every level. That is critical to the success of the legislation and ensuring we bring it as close as possible to conformity with the goals of the UN convention. I have previously stated there are a number of gaps. I am happy to follow up with more examples, if needed.