Nem Kearns:

I thank the Cathaoirleach, Leas-Chathaoirleach and esteemed members of the committee for their invitation to attend this session to provide pre-Committee Stage detailed scrutiny of the Autism Spectrum Disorder Bill 2017. I aware that it has been updated since then. Neuro Pride Ireland is a national disabled persons organisation, DPO, representing neurodivergent people from, or living on, the island of Ireland. We were founded as a national cross-neurodivergency organisation in response to community need, as the majority of neurodivergent people have more than one neurodivergent identity. For example, up to 80% of autistic people also have ADHD. In addition to holding monthly peer support, cultural and social events and an annual festival for our more than 1,000 members, we also produce educational materials and actively advocate for neurodivergent people’s right to full participation in all aspects of society. We welcome the committee’s invitation to participate in this discussion on behalf of the autistic community we represent.

Before speaking to the Autism Spectrum Disorder Bill in detail, we wish to recognise Deputy Canney’s dedication to upholding disabled people's rights and making real the vision of full equality in all aspects of life outlined under the UN Convention on the Rights of Persons with Disabilities, UNCRPD, as evidenced by his work with the Joint Oireachtas Committee on Disability Matters as well as in other areas. When we spoke with him back in November of 2021 in front of that committee, we welcomed his acknowledgement of the importance of removing dehumanising and stigmatising language and aspects from this Bill, as well as addressing its troubling aspects regarding data collection within its provisions. As Ireland’s only national cross-neurodivergency DPO, we look forward to following through on his offer that day to work with all stakeholders to ensure that this Bill is as robust as rights-based as possible under his stewardship.

An important facet of this, and one we wish to raise the importance of, is including the views of the least heard members of the autistic community, such as non-speaking people, those with intellectual disabilities and those from minority communities, who often have invaluable insights that should inform any proposed legislation, strategy or intervention impacting on their lives. We have been following the work of this committee and the work of its members who also serve on the Joint Oireachtas Committee on Disability Matters with interest, and believe we have a shared recognition of the importance that the principles and provisions enshrined in the UNCRPD inform discussion of all aspects of the Bill. We acknowledge that many of the concerns we wish to raise may have already been noted by the stakeholders that we have been working with prior to this meeting. It should be noted that we have not had the opportunity to view the updated Bill or its amendments, so some of my points may not be fully reflective of the Bill in its current form. I apologise in advance for any repetition of points that have already been raised elsewhere.

The Bill was originally drafted prior to Ireland’s ratification of the UNCRPD and its enactment of GDPR, so some of its provisions fall short of full alignment with the convention. We suggest that a specific acknowledgement that autistic people are not just users of services, but full and equal citizens, must be included in section 3(1) to stipulate that a national strategy for autistic people must advance autistic people's access to the full range of the UNCRPD rights. This will provide a useful reframing of the legislation and reassure the public and the community that it is in no way intended to create a segregated approach to autistic people's rights and issues.

One of the provisions of the Bill that was progressed before the ratification of the UNCRPD refers to the consultative duty conferred on the Minister, which includes no mention of the prioritisation of direct consultation with autistic people through their representative organisations, as required under Article 4(3) of the convention. Nor has the Bill itself undergone such a robust consultative process. We trust that it is intended that this will be explicitly addressed and we encourage members to expand the scope of section 2(1) to include a non-waivable duty for direct consultation with a broad range of autistic people by the Minister and throughout the development of the strategy.

On the provision for the annual assessment, I believe it has been amended and there will be a five-yearly assessment. It seems to be indicated that that will run parallel to the assessment of need process. I would welcome any clarification on whether it is intended to be a full assessment of need process or more of an organic assessment to evaluate the best placed supports and services for a person at each stage in their live and at transition points. I would also welcome clarification on how it is envisioned that the assessments under the provision will interact with the children's disability network teams, CDNTs, and the progressing disabilities framework, which was introduced after this Bill was drafted. We would also like information on whether any such assessment will include mental health assessment and support, which is currently gravely lacking for autistic people for all ages. Despite having a much higher risk of depression and suicide than their peers, many autistic children in Ireland continue to be denied access to CAMHS due to their diagnosis of autism. Autism is characterised as a lifelong developmental difference, so a diagnostic assessment here would place enormous stress on the system and on autistic people and their families, while having no value basis. We are seeking clarification on whether this is a full assessment of need, whether there is a diagnostic element, what these assessments are envisioned as doing and how they will support autistic people's lives, and whether there is a need to stipulate a multidisciplinary assessment. We are concerned that the Bill refers to a restricted list of professionals that includes behavioural therapists. There is a growing and very robust body of evidence that that is not the support being sought out by the autistic community. In its report on aligning disability services with the UNCRPD, the Joint Oireachtas Committee on Disability Matters found that there is great reason to believe that behavioural therapist interventionist practices do not align with the UNCRPD.

We also have concerns about the mention of capacity in the Bill. The Assisted Decision-Making (Capacity) Act was enacted earlier this year to replace the Victorian Lunacy (Ireland) Act on capacity. We are moving away from a view that capacity is either something an individual has or does not have, to a more rights-based understanding that capacity is something that the State, through its agents and those working directly for the State with individuals, has a duty to provide all possible supports and to empower individual decision-making on a case-by-case basis. We also have concerns about the wording around capacity, which stipulates that if decision-making capacity is deemed not to be present for an individual, the decision is to be made by their parent or primary caregiver, which does not align with the provisions of the Assisted Decision-Making (Capacity) Act. We would welcome specific focus on the interactions and rights there to ensure that assisted decision-making is not inadvertently undermined through this Bill.

The provision for data collection is also of great concern to our members and our community. We have particular concerns around section 3(j) of the Bill, which refers to the collection of data from service providers. I believe it has been updated to the executive. As well as predating the UNCRPD, the initial draft of this Bill predated the GDPR and Ireland's Data Protection Act. We strongly urge that there is very focused scrutiny given of this aspect of the Bill and request that a data impact assessment is embedded into the Bill. It is of critical important that there is huge transparency around this. There is great discomfort around the use of autistic people's data and the non-consensual gathering of data, and there are well-founded reasons for that within the autistic community, as highlighted by the recent autism dossier scandal and the HSE data breach. We would very much like to see much more scrutiny there. I will not go through everything else here. I have included it in the written submission to the committee. I thank the members for the invitation to represent our community members here and look forward to engaging with them further on this topic.