Will you be RADICAL?

 A call to Action for Revision of the Disability Act 2005

Social Structures

Authors: Mac MacLachlan, Delia Ferri, Delma Byrne and Anastasia Campbell – Assisting Living and Learning (ALL) Institute, Maynooth University

Black Background. White font large letters ‘Have your Say’ underneath subheading ‘Be RADICAL’ underneath text reads ‘Revision of the Act on Disability in Ireland through Collaborative Action for new Legislation’, the R, A, D, I, C, A, and L are bolded and underlined.
Be RADICAL: Revision of the Act on Disability in Ireland through Collaborative Action for new Legislation

By asking you to be RADICAL we are asking you to join us in calling for the Revision of the Act on Disability in Ireland through Collaborative Action for new Legislation.

We want to harness both new thinking and dissatisfaction concerning the Disability Act (2005), by constructively focusing on ideas for why and how the Act should and could be improved, now!  

Our aim is to encourage legislators, and particularly the Minister for Disability, Anne Rabbitte, to begin the long-overdue process of legislative reform in disability.  This year revision of the Education for Persons with Special Educational Needs, (EPSEN) Act (2004), was announced. Revision of EPSEN, without revision of its ‘sister Act’, the Disability Act (2005), with which it is closely intertwined, makes little sense.  Furthermore, both of these acts predate the United Nations Convention on the Rights of Persons with Disability (CRPD) which, since our ratification in 2018 (we were the last country in  Europe to ratify it), means that we are now obliged to comply with and deliver on the Convention. 

The Ombudsman for Children, the CEO of the HSE and the Clinical Lead for the National Clinical Programme for People with Disability are just some of the people ‘within the system’ who have called for revision of the Disability Act (2005).  Will you join them?   The recent “Mind the Gap” report, which examined barriers for children with disability accessing services, argues that “A complete review of the Disability Act 2005 is recommended as it no longer aligns with current national policy, or with current international human rights, particularly under the UNCRPD”.

Below we briefly present just some of the reasons why we think the Disability Act (2005) needs revision.  We hope you will join us by going to this link – where we have reproduced the Act section by section – and taking just a few minutes to suggest (anonymously if you wish) why you think the act should be revised and/or how it could be improved.  Equally, we welcome disagreement – you may oppose some ideas for revision – and we want to hear that too.  We will share comments on our website to stimulate further debate and action.

Collectively – with your contribution – we can support both the initiation of legislative revision and contribute some ideas for that process.   

What was the significance of the Disability Act?

Following widespread dissatisfaction with the Disability Bill (2001), the Disability Legislation Consultation Group (DLCG) was established and published recommendations in 2003 for new legislation, which ultimately led to the Disability Act 2005.  In its time this was a progressive act and a key piece of legislation within Irish disability law. In the Initial Report of Ireland – in 2020 – under the Convention on the Rights of Persons with Disabilities (CRPD) requirements, the Disability Act 2005  was correctly described as ‘a positive action measure designed to advance and underpin the participation of people with disabilities in everyday life’. It places a range of accessibility duties on public bodies and service providers and requires Government departments to prepare and publish sectoral plans on disability.

The Act supports and complements a set of anti-discrimination laws, which have been progressively expanded, i.e. the Employment Equality Acts 1998-2015 which ban discrimination on various grounds, including disability, in the employment context; and the Equal Status Acts 2000-2018 prohibiting discrimination on grounds (including disability) in access to goods and services, housing/ accommodation, education, and registered clubs.

Why use an outdated definition of disability?

This Act defines ‘disability’ as a ‘substantial restriction in the capacity of the person to carry on a profession, business or occupation in the State or to participate in social or cultural life in the State by reason of an enduring physical, sensory, mental health or intellectual impairment’. The Act also provides that ‘substantial restriction’ means a restriction which “is permanent or likely to be permanent, results in a significant difficulty in communication, learning or mobility or in significantly disordered cognitive processes”. Further, for the purpose of the Act, such a restriction is meant to give rise “to the need for services to be provided continually to the person whether or not a child or, if the person is a child, to the need for services to be provided early in life to ameliorate the disability”. This definition is problematic in several respects.  A social and rights-based approach to disability understands ‘substantial restriction’ to arise from the experience of being disabled by social or physical barriers, rather than this being an attribute of the individual – the latter being much more in keeping with a deficit-focused medical model of disability.  This deficit-focus is further reinforced by the idea of “impairment”; which fails to recognise the legitimacy and benefits of a diversity and difference approach to understanding disability.  For instance, the neurodiversity movement sees Autism not as a deficit, disease or disorder, but as a difference, which as well as constituting challenges may also confer real benefits for some people. The idea that disability is only recognised if it is deemed “permanent” and “enduring”, or that restrictions are only legitimate if they can be ameliorated by services, is also archaic.

While, importantly, the Act does provide a statutory basis for dismantling barriers in access to public services, the definition does not align with the thinking that underpins the Article 1(2) of the UN Convention on the Rights of Persons with Disabilities (CRPD). It is also at odds with the human rights model of disability, outlined by the CRPD Committee’s General Comment No. 6 (2018), as the overall prescriptive model that must inform disability law and policy. This outdated definition included in the Act also coexists with different definitions provided for in anti-discrimination legislation elsewhere. Such a ‘patchwork’ of conceptual confusion in Irish legislation does not support a consistent approach to the rights of persons with disabilities.

Waddington and Priestley recall that the CRPD has highlighted numerous times in its reviews of state reports “the need for a contextual understanding of disability and a human rights approach”, and has placed emphasis on the “social and relational dimension of disability”. They suggest that the CRPD should lead to the adoption of a “definition of disability framing an assessment mechanism [that] reflect[s] a social-contextual rather than an individualized approach”.  We agree – we suggest this should be a cornerstone of a revised Disability Act.

Who wants just an assessment?

The Disability Act 2005 provides for an assessment of need and the specification of the services and supports which are required to allow the person to participate in society on an equal basis with others. Yet this “Service Statement”, or what it is that the person requires to assist them, is not enforceable.  That is, there is a legal entitlement to an assessment but there is no legal entitlement to the services that are identified as necessary. Knowing what you need and knowing that it is not available to you – often for many years – is a perverse right within the Act.  Assessment is only a means to an end; it is access to services which should constitute the right, with the assessment a necessary pre-requisite, not an end-of-the line service.  We have previously blogged about the assessment of need (AoN) process referred to in the Act, and its problematic nature for broader service provision, in the context of the recent 2022 judgement of Justice Phelan. This well-intentioned ruling has however, moved the Act back into the medical-model space, by calling for a diagnosis “where practicable”, and in fact introducing the word “diagnosis” into the Act for the first time ever.

When is an Act not an Act?

This may sound like a joke, it’s no joke.  The answer is when it is not ‘enacted’; or not “commenced”, as it is referred to. What this means is that although legislators have agreed to it, and put it on the statute books, they have not actually decided to support its implementation.  Often when this happens it is on the basis of cost. That is, an unwillingness to commit to the cost of implementing it. Neither the Disability Act nor the ESPEN Act have been fully implemented; that is, key provisions agreed in these Acts (17 and 18 years ago respectively) have not been put in place. We are failing in the realisation of rights around (a broader range of) supports for education and wellbeing (and their distribution).  For instance, there is a need for better education and training for teachers and an improved flow of information between children, young people and their families and school authorities. This means that these acts are, at least in part, well, in-active!

Be Active – Act Now – Be RADICAL

Our disability Act is outdated. Since its approval in 2005, alongside the ratification and entry into force of the CRPD, there have been an array of European Union (EU) legislation and  policies which Ireland should align to and embrace. With regard to policies, the EU has released the European Disability Strategy 2010-2020 and the subsequent Strategy 2021-2030. The EU Pillar of Social Rights also includes a provision on inclusion of persons with disabilities and establishes that “[e]veryone has the right to quality and inclusive education”. Accessibility has also been at the forefront at the EU priorities, with the most recent European Accessibility Act (2019) that needs to be transposed by Ireland within 28 June 2022.   Other countries have undertaken legislative review and other processes of reform, and Ireland should do the same.

Our disability act is out of time and out of step with the CRPD.  Our disability Act provides an inappropriate definition of disability and perversely allows for assessment, but not intervention.  And our disability Act is slipping backwards into a medical-model way of thinking about disability.  We urgently need to fulfil our obligation to the ratification of the CRPD. We urgently need our legislators to be genuinely enacting what they sign up to and providing people with disability with access to services that allow them the same opportunity to participate in society and enjoy the opportunities of being Irish that many of the rest of us take for granted.   

We ask for your help by commenting on the Disability Act – here and now.  

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