Review of the Disability Act 2005 - Public Consultation

 

ME Advocates Ireland & ME Community Submissions – Review of the Disability Act 2005
 

ME Advocates Ireland (MEAI) is preparing a detailed submission to the Government's review of the Disability Act 2005, setting out the changes we believe are needed to ensure that the rights and needs of people with Myalgic Encephalomyelitis (ME) are properly recognised within Ireland's disability legislation and services. We will publish our submission when it is completed.

 

Our submission draws particular attention to the realities of living with a fluctuating, often invisible and energy-limiting disability. It highlights the importance of assessing a person's safe, reliable and sustainable functional capacity, rather than judging disability by appearance, diagnosis alone, what someone can manage on a good day, or what they can do once at the cost of deterioration.

 

The submission addresses all relevant parts of the Disability Act and makes detailed recommendations concerning Assessment of Need, access to disability and community supports, independent living, Personal Assistance and home support, accessibility and reasonable accommodation, Universal Design, employment, transition from children's to adult services, genetic information and emerging technologies, enforcement, accountability and effective remedies.

 

A central theme throughout MEAI's submission is that rights must work in practice, not simply exist on paper. For people with ME, accessing an assessment, service, support, workplace or complaints process should not require them to repeatedly exceed their safe capacity or worsen their health simply to demonstrate their disability or exercise their rights. This is particularly important for people with Severe, Very Severe and Profound ME, including those who are housebound or bedbound.

 

MEAI's submission calls for a Disability Act that better reflects the diversity of disability and is aligned with the human-rights principles of the UN Convention on the Rights of Persons with Disabilities (UNCRPD): one which recognises individual need, supports choice and control, enables independent living and participation, and provides meaningful accountability when rights and obligations are not fulfilled.

 

These themes are strongly reflected throughout the detailed submission, including the connection between assessment, appropriate supports, accessibility, participation and effective remedies.

 

Community Submission Templates
 

Alongside MEAI's full submission, we have prepared Short and Ultra-Short Community Submission Templates to make it easier for people with ME, family members, carers tand other supporters to participate.

 

The templates are not intended to replace MEAI's detailed submission. Rather, they provide a way for individual submissions to reinforce its key recommendations while adding the voices and lived experiences of the people directly affected.

 

The Short and Ultra-Short templates therefore reflect the same central priorities raised in MEAI's submission: recognition of fluctuating and energy-limiting disability; assessment based on sustainable functional capacity; timely access to necessary supports; safe and proportionate assessment; continuity of support when young people move into adult services; accessible services for people who are housebound or bedbound; reasonable accommodation; independent living, choice and control; and meaningful, enforceable rights.

 

Every individual submission matters.

 

While common recommendations can demonstrate that particular problems are shared across the ME community, personal experiences help show what those problems mean in real life. They provide evidence of how legislation, policies and services affect people with ME and their families in practice, whether through difficulty obtaining support, inaccessible assessments, lack of understanding of ME, deterioration caused by the demands of accessing services, gaps when moving between children's and adult services, or barriers to independent living and participation.

 

For this reason, we encourage people who are able to use the templates to add even a few words about their own experience. It does not need to be a long or detailed account. One or two personal examples can help build a broader picture of the experiences of people with ME across Ireland and add valuable lived-experience evidence alongside MEAI's organisational submission.

 

At the same time, we recognise that many people with ME have very limited energy and cognitive capacity. The Ultra-Short template has deliberately been kept brief so that people who cannot manage a detailed submission still have an opportunity to have their voice represented. The template itself recognises that ME may make providing a detailed submission difficult.

 

The aim is not for every submission to be identical. It is for many individual voices to reinforce shared concerns, while together showing the breadth and reality of living with ME and disability in Ireland.

Submission Templates

(Please Note: we are updating the submission templates over the coming days to ensure we will have included all important issues shared with us through feedback, so please excuse any changes currently being made to the submission templates. Issues shared with us are referred to in general without going into too much detail; then individuals can elaborate in the My Personal Experiences section)

(a) Short ME Community Submission (to be edited by the person using the template)

(b) Ultra short ME Community Submission (to be edited by person using the template)

Further Details

Deadline

Please note: the call for submissions deadline has been extended to Friday 9 October 2026 at 5pm

Disability Act 2005 – Short Guides

(a) Quick Guide - Disability Act 2005 by National Platform of Self Advocates:

(b) Simple Guide for ME Community by MEAI

Please see our short guide for people with ME, family members and carers which we put together for anyone interested in completing and sending a submission:

How to Participate

Online Submission:

You can make a written submission using a simple online form. This can be accessed at the following link:

Online Form



Email Submission:

Email submissions from can be sent to disabilityactreview@dcde.gov.ie

Please note that submissions made to disabilityactreview@dcde.gov.ie are subject to a file size limit of 25MB. You can send larger files using the link below:

File Upload




Video/Audio Submissions:

If making a written submission is not accessible for you, you can make an audio or video submission. Video submissions can be made in Irish Sign Language.

The video can be emailed as an attachment to disabilityactreview@dcde.gov.ie (subject to a file size limit of 25MB).

For larger attachments, please use the link below:

File Upload



Postal Submission:

You can send a submission by post to the following address:

The Disability Equality Policy Unit
Department of Children, Disability and Equality
Block 1, Miesian Plaza
50-58 Baggot Street
Dublin 2
D02 XW14
Freepost F5055

Department of Children, Disabilty & Equality Details

Report 2026 - The Disability Act 2005 at 21: Reflecting, Reforming, Reimagining Lived Experiences, Rights and Reform Priorities for the Disability Act 2005 at Twenty-One Years

For anyone who wants to complete a more comprehensive submission, which would not be an easy task for most individuals with ME, the NUIG report, ‘The Disability Act 2005 at 21: Reflecting, Reforming, Reimagining’, 2026 by Professor Shivaun Quinlivan & Dr Charles O’Mahony NUG may be useful.

This report is structured to support engagement with the forthcoming review of the Disability Act

2005.

It moves from context, to evidence, to synthesis and reform priorities in a way designed to be

useful to disabled people, Disabled Persons’ Organisations, policymakers and others participating

in the reform process. The aim is to provide some analysis of the Act, but also seeks to provide a clear and accessible evidence base to inform the next phase of legislative development.

Our Thoughts about this Public Consultation

It is the role of the review to analyse people's experiences against the Disability Act 2005, identify relevant legislative provisions and determine whether changes are needed.

It should not be the role of ordinary people, often already facing significant barriers, to do that work before their experiences can be taken seriously.

A genuinely inclusive review must seek to hear from people because they have lived experience not because they have the ability to prepare a detailed submission.

The guides and templates we have provided are intended to help people who want some basic understanding of the Disability Act 2005.

But they are also intended to emphasise something equally important: people's lived experience is itself evidence and deserves to be heard.

Lived experience, not legal knowledge, must be the gateway to participation.

Our previous Submissions

Cost of Disability Submission 2026 to the department of Social Protection

Submission to the Public Consultation: Successor to the Roadmap for Social Inclusion 2020–2025 (2025)

Green Paper on Disability Reform Submission November 2023

Pre-Budget 2024 Submission September 2023

Joint Committee on Disability Matters Submission November 2020