September 7th, the Publication of the ‘European Care Strategy’: A Brief Appraisal of the European Commission’s Strategic Policy Document

Social Structures

Author: Matthew McKenna, PhD Researcher at Maynooth University’s Assisting Living and Learning Institute (ALL), Research Funded through the Science Foundation of Ireland (SFI) Centre for Research Training in Advanced Networks for Sustainable Societies (ADVANCE CRT)

Matthew McKenna Profile Picture
Matthew McKenna

The highly anticipated publication of the European Commission’s (EC) ‘European Care Strategy’ (ECS/strategy) on the 7th of September 2022 has been met with cautious optimism and circumspection. Certainly, there is a unanimous agreement that the arrival of this strategy is a welcome policy development. However, last week’s unveiling of the ECS also underlined how long overdue this development has been, and it represents an initial and elemental step in addressing the long-term systemic deficiencies in the European Union’s (EU) approach to the care of its citizens. If one is to view this radical collective change as a physical journey, then the ECS is arguably representative of a social and legal point of embarkation from a policy sense, and it is certainly not a final destination.

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A Moratorium on the Capacity Act: Delaying Disability Rights

Social Structures

Author: Hannah Casey, ALL Blog Editor and PhD Candidate in the Department of Psychology

Hannah Casey Profile Picture
Hannah Casey

In 2015, the Assisted Decision-Making (Capacity) Act (the Act) was signed into Irish law. This Act aims to ensure that Ireland is legally compliant with Article 12 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD/the Convention). Article 12 states that a person with disabilities has the right to legal capacity on an equal basis with others, and that they are entitled to government assistance to exercise that capacity. Ireland ratified the UNCRPD in 2018, in the belief that the Capacity Act ensured full legal compliance with the Convention. However, as of now, the Capacity Act, while signed into law, has not been fully commenced by the Irish government. This is despite the promise that it would be fully commenced by the end of June 2022.  

This delay has been attributed to several factors by the government. Primarily, there have been a number of amendments made to the Act, collectively known as the Assisted Decision-Making (Capacity) (Amendment) Bill, 2022. These amendments have been introduced in an effort to clarify aspects of the Capacity Act, and address more controversial aspects of it, such as the regulation of the use of restraint, and public hearings. This delay, and indeed the continued delay in commencement over the past seven years, has been cited as necessary to ensure the proper resources are in place, and the legislation correctly laid out. An admirable sentiment, but one which is proving costly to those whom the law will primarily affect. 

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Labyrinths of the United Nations Conference of State Parties: How not to get lost

Social Structures

Author: Iryna Tekuchova, PhD Researcher, Department of Law, Maynooth University

Iryna Tekuchova taking a selfie at the UN COSP 15
Iryna Tekuchova

The health application on my phone notified me that, within the three days that comprised the 15th session of the UN Conference of State Parties to the CRPD (the UN COSP 15), I walked 18 km. And these 18 km, 23687 steps, were made only in the New York UN Headquarters: a 39-floor building located on 17 acres of land, with the General Assembly Hall capable of accommodating 1158 country delegates and hundreds of NGO representatives. So, what is the UN COSP, and what is behind its agenda that turns you into an ‘athlete’?

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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. 

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“Human rights crisis within a crisis” – Intersectional challenges for persons with disabilities in the war in Ukraine

Social Structures

Author: Rebecca Daniel – PHD Student, Assisting Living and Learning (ALL) Institute, Department of Psychology, Maynooth University

Rebecca Daniel
Rebecca Daniel

The situation of persons with disabilities during the current war in Ukraine has been repeatedly described as a “crisis within a crisis” during the past number of months. This blog post aims to reflect on the multiple forms of discrimination that persons with disabilities face in times of conflict.

Approximately 15% of the worldwide population has a disability. The United Nations Office for the Coordination of Humanitarian Affairs (OCHA) estimated that 13% of people in Ukraine, in need of humanitarian assistance in 2021, had a disability. In situations of war and conflict, these numbers can even increase, since many disabilities are caused or worsened by war (e.g. through war injuries, a lack of health care provisions, or post-traumatic stress disorders). Given this, it can be estimated that the numbers of persons with disabilities directly or indirectly affected by the war in Ukraine are even higher than those estimated above.

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Judicial Review of Assessment of Need

Social Structures

Author: Mac MacLachlan, Co-Director of the Assisting Living and Learning (ALL) Institute, Professor of Psychology & Social Inclusion, Maynooth University and Clinical Lead for Disability Services, Irish Health Service (HSE)

Professor Mac MacLachlan Profile Picture
Mac MacLachlan

On the 11th March 2022, Justice Siobhan Phelan’s Judicial Review , was released which sought to address the grievances in two particular cases, and to interpret the intensions of the Disability Act (2005) regarding the Assessment of Need (AoN) process. I can make no comment on the particular cases, but I would rather comment on the broader issues touched upon in the decision and on Justice Phelan’s interpretation of the AoN process, while well intentioned and carefully considered, seems to me very problematic. While she refers to a related 2019 report from the ALL Institute on a closely related topic, the judgement will not help us address the challenges, which are certainly not unique to the Irish context.

The Standard Operating Procedure (SOP) for the AoN was introduced to have a standardised and shorter assessment time, allowing for services that assist children and parents to be provided more quickly.  It allowed for assessment continuing as part of routine clinical practice alongside services such as therapy, recognising that assessment is not a one-off event, and that people’s needs change over time.  The SOP also allowed for the situation where, should a preliminary assessment not be sufficient to identify the need for services, then a more detailed assessment would follow. This is a pragmatic approach, to maximise the impact of available resources, as the Health Service Executive (HSE) is compelled to do under section 7 of the Health Act (2004): resources should be used in the “most beneficial, effective and efficient manner”. 

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Gender-based Violence and Disabled Women: Let’s Talk

Social Lives

Author: Eliona Gjecaj is an early-stage researcher in the DARE project (Disability Advocacy Research Europe) based at the University of Iceland. Her PhD research focuses on ‘Violence against Disabled Women: Access to Justice’ in Iceland and the UK.

Eliona Gjecaj
Eliona Gjecaj

Today, on International Women’s Day, I would like to celebrate all the survivors of gender-based violence, especially disabled women, and encourage others to come forward and tell someone. Gender-based violence is not and should not be taboo. Much like the saying ‘talk the talk, walk the walk’, we must have the experience talk. We must access the justice walk.

Let’s first  highlight that there are so many unheard experiences of gender-based violence of disabled women that we need to hear, to believe, to recognise as breaches of law, and thus, provide support and access to reporting and prosecuting such violence. Lack of disability-rights-based knowledge, awareness, and training should not be the defence, but rather acknowledged and addressed. Not just in Ireland, but in many countries across Europe.

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The Tragic Age: Life without a PA

Stories/Lived Experiences

Author: Ross Coleman is a Translator, Writer and Disability Rights Activist from Dublin

Ross Coleman Profile Picture
Ross Coleman

“Ours is essentially a tragic age, so we refuse to take it tragically”, thus opens D.H Lawrence’s famous novel Lady Chatterley’s Lover, published in 1928 in which a bored unfulfilled housewife embarks on an affair with the gardener on her husband’s estate. Clifford Chatterley, Lawrence informs us, is a cripple, badly injured from serving in the front. Since his injury, he has become cold and unfeeling, absorbed in books and his intellect, only going outside to toot along in his electric bathchair. When I first read the book a few years ago, I dismissed it as a bygone relic of an ableist age. And yet, despite that, I was forced to admit a single harrowing fact: nothing has really changed.

I require a Personal Assistant (hereafter referred to as a PA) in order to help with daily tasks that I cannot do myself: getting dressed, going to the bathroom, showering. At the moment, my parents provide this support and have been providing it since I was born.  If I want to go out, I either have to go out with my parents or just not go to the bathroom. Neither of these are desirable solutions. I should not expect, neither do I want, my parents to accompany me to every social function, but nor can I just not go to the bathroom.

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Election to the CRPD Committee: Some Insights from Behind the Scenes.

Social Structures

Author: Iryna Tekuchova, PhD Researcher, Department of Law, Maynooth University.

Iryna Tekuchova

“Being a human rights treaty body member is highly rewarding,” states the UN Handbook for Human Rights Treaty Body Members. It also mentions that the member of the Committee on the Rights of Persons with Disabilities (the Committee) is expected to have “high moral character” and “recognized competence and experience in the field”. However, this document is silent about the fact that beyond these qualities and merits, the candidates to the Committee often have to face a rocky electoral path, which turns to be difficult for many. Being an expert in a field covered by the Convention on the Rights of Persons with Disabilities (the CRPD) and having “high moral character” is not enough to have a real chance to be elected. 

In 2020, I had the unique opportunity to coordinate the election campaign of one of my former colleagues in the Ukrainian organization for people with disabilities “Fight For Right”, who stood as the Ukrainian candidate to the Committee in the seventh election cycle. Looking back at the nomination and election campaign paths, which we have done, I can identify some tendencies and systematic challenges of these processes relevant for the candidates and the countries. Even though each candidate’s experience is unique and varies from State to State, some points of concern, incidental for Ukraine, might resonate with other countries and, thus, be subject to further analyses. In this blogpost, I would like to highlight four issues that may directly or indirectly influence the efficiency of the whole election process to the Committee.

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Supported Decision Making and Next of Kin: The DSS Perspective and new perspectives for innovative participatory research

Social Lives

Author: Hannah Casey, Assisting Living & Learning( ALL) Institute Blog editor and PhD Candidate, Decision Support Service

Hannah Casey Profile Picture
Hannah Casey

Supported Decision Making is a method that may be employed by persons who require help to make decisions in their day-to-day lives. These decisions may range from, where to go on holiday, to, how to manage financial concerns. Supported Decision Making is gaining traction and importance across the globe, and particularly in an Irish context in anticipation of the Assisted Decision Making (Capacity) Act 2015, set to be commenced in full by mid-2022. This has the added effect of ensuring Ireland may fully honour Article 12 of the United Nations Convention on the Rights of Persons with Disabilities, which states that persons with disabilities have the right to make their own decisions, and enjoy the same legal capacity that people without disabilities have in their lives. The Decision Support Service (DSS) has been established to support persons to exercise their right to make decisions, with the key understanding that a person’s capacity to make decisions should be assessed by reference to the decision in question.

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