Mr. Niall Brunell:

I am pleased to address today’s session on the Autism Spectrum Disorder Bill 2017. At the outset I acknowledge the cross-party work of this committee and its clear efforts in seeking to drive progress for people with disabilities, including autistic people. This is a shared goal and is reflected in a range of programme for Government commitments relating to both disability and specific action on autism. It is under these commitments that the Department, after the transfer of disability functions from the Department of Health, will bring forward measures in the coming period, such as the disability services action plan, the progressing disability services, PDS, roadmap, and the autism innovation strategy. We will also be continuing ongoing targeted consultations on the next national disability strategy, which will soon progress to full public consultation.

To address the autism strategy in particular, we intend to deliver a draft strategy by the end of this year, depending on the exact timing of consultations. The autism innovation strategy will focus on bolstering provision within the mainstream offering in terms of services and initiatives for autistic people, without creating overly rigid or separate structures at a time when our understanding of autism continues to evolve, and without establishing sets of rights not enjoyed by other persons with disabilities. In doing that, our approach is to ensure we advance a coherent, responsive, and effective framework, not only across the autism innovation strategy, but the full programme of work I have referenced. It will address the bespoke needs of autistic people and those of other disabled persons on a responsive, equal, and evidence-informed basis.

Autism is a complex issue, about which our understanding at a policy and clinical level is maturing. The apparent increase in incidence rates of autism, along with the need to vindicate the rights of autistic people as with other persons with disabilities, merits an appropriate policy response. It is for this reason that Government is advancing a national strategy on autism. However, there is much about the nature of this rising rate that is not properly understood in a national and international context. We need to ensure our responses can evolve with our understanding, are operationally practicable, and advanced on the basis and principle of equal provision.

It is with this approach in mind that any consideration of the proposed Autism Spectrum Disorder Bill should take place. At its core the Bill is a laudable document that seeks to improve access to services, foster greater understanding of autism, and advance the social inclusion of autistic people. The Department shares these goals, but does not necessarily consider legislation to be the most appropriate means of advancing those goals. In that respect we have certain concerns about the Bill. These include policy concerns such as alignment with existing and planned national policy and with the UN convention, concerns regarding equality of provision that may also extend to legal risk, potentially significant adverse operational consequences, and concerns around enshrining certain terms in legislation while our understanding of autism continues to develop. There are also potentially a significant number of technical and drafting issues which appear to arise. This is reflected in the Government position on this Bill to date. The Government has not opposed the Bill and is committed to much of the action called for. The question of Government support for the legislation under discussion today, is of course a policy matter for Government to decide. In further considering this, there will be a number of important factors to take into account.

A key consideration is whether the best means of advancing the goals of the Bill is to allow time for policy and action frameworks such as the autism innovation strategy to be developed and progressed. This will drive reforms and improvements by way of bolstering more inclusive and more effective mainstream progress, that includes and takes account of the bespoke needs of autistic people. In 1996, the landmark report of the Commission on the Status of People with Disabilities was published, in a process that firmly and fully embraced the ethos of “nothing about us without us.” The Commission established a fundamental principle for disability equality in Ireland, mirrored in other instruments such as the United Nations Convention on the Rights of People with Disabilities, UNCRPD. We must not fall into the trap of conceiving of disability equality only in terms of differences between disabled and non-disabled persons. We must also think of it in terms of equality in and between people with disabilities, so we do not create hierarchies or discriminate between disabled persons on the basis of impairment specific or medicalised categorisations.

That is not to say we cannot recognise and respond to bespoke needs – we can. However, it is to say that we should not grant unto one cohort of disabled persons rights and entitlements that are not enjoyed by all disabled persons. To do so is not only undesirable but potentially risks exposure to legal challenge. Advancing action on autism via primary legislation itself carries a risk of unintended consequences. For example, the definitions in the Bill are based in the language of medical diagnoses, which we know will evolve in line with our understanding and with clinical practice. Moreover, medical categorisation itself does not align with the language and ethos of the UNCRPD, which the committee is aware emphasises a social model understanding of disability. Failing to include a particular condition in the list of definitions could lock out from support someone the Bill may be intended to assist. In our view, complex and evolving issues are better addressed through more responsive frameworks, such as national strategies with robust monitoring and accountability mechanisms that can pivot in real time to changing needs and issues. This has held true for a wide framework of strategies that have delivered tangible progress across a range of equality grounds.

I will turn to the issue of provision of health services in the Bill. The Department is concerned that the Bill could serve to undermine efforts now under way to drive the very improvements the Bill seeks to bring about. The creation of separate or parallel channels for services and assessments for autistic people gives rise to significant operational concern. The Bill would appear to seek to duplicate the assessment of need process, which is already inclusive of autistic people, with an unclear basis for seeking to do so.

This risks operational uncertainty and duplication of labour, whilst also being open to potential challenge on equality grounds. A more sustainable and feasible approach in the long term is to ensure that our mainstream services meet the needs of all disabled persons, including autistic people. That is the programme of work being advanced.

A balance must therefore be struck in ensuring that improvements to the mainstream delivery of health and social care services take sufficient account of the needs of autistic people and that services are accessible to those cohorts. The optimal pathway for this is not the creation of parallel or additional entitlements. Rather it is to advance the important reform efforts currently under way across the health system intended to benefit all people with disabilities, including autistic people, and to change and review our delivery of those mainstream services to ensure they are inclusive of autistic people. That shift in the mainstream is the business of the autism innovation strategy, which will focus on clear and foundational actions to identify gaps and bespoke needs in relation to autism that are not already accounted for in existing mainstream measures, and it will seek to bolster and enhance mainstream provisions in relation to autism, including the areas of services, data, attitudes, and public understanding.

In conclusion, whilst it is recognised that the goal of the Bill is a well-intentioned desire to drive improvements, significant issues arise for consideration. I look forward to further discussion.