Give Grace the tools to take back her power
The lesson of Grace’s story and the silence that surrounded her experience is this; when people are not supported to speak, their rights can disappear entirely. File picture
By now, we're all aware of the Farrelly Commission report. We have heard what happened to Grace. We cannot unhear it.
There has been plenty of commentary on what the report has not done, but what it has done is highlight something that advocates have known for years because of our work. Too often, people with disabilities are still left out of decisions about their own lives and their voices go unheard when it matters most.
Alarmingly, fresh revelations have now further highlighted that extensive submissions made by Grace’s legal team were not included in the final report, silencing Grace’s voice to an even more serious extent.
This raises deeply concerning questions about how we protect rights and voices today. Even in the very process designed to investigate past failings, the voice of the person was completely lost.
That is exactly why independent advocacy is more crucial than ever and is why Ireland urgently needs a comprehensive government strategy for independent advocacy – one that is robust, person-led, and adequately resourced for adults and children with disabilities.
Every day across the country, advocates with the National Advocacy Service for People with Disabilities (NAS) support adults with disabilities to have their voices heard. Sometimes that means supporting a parent to navigate childcare proceedings in court, other times it means supporting a person to challenge a living arrangement that isn’t right for them or to speak up about how they are being treated in residential care, in day services or in their community.
Advocates support people to be heard on issues relating to personal finances, relationships, access to services and abusive experiences. Advocates are not there to speak over someone, they are there to stand beside them, to support the person in expressing their wishes, make informed choices and assert their rights.
It is person-led, person-directed support, and it is a vital part of realising equality. In doing so, it views the person as a rights holder with their own autonomy. This work is happening quietly, professionally, and powerfully every single day.
Over the past week, many have pointed to the vital role NAS plays. However, the service remains overstretched and under-resourced. Hundreds of individuals with disabilities are in need of advocacy to access healthcare, challenge decisions, or live with dignity but are left waiting for an advocate.
The role of independent advocacy is also a crucial aspect of ensuring people who communicate differently are heard and respected. The omission of Grace’s legal submissions from the commission’s final report is a stark reminder of what happens when voice is not safeguarded in every space, at every level.
Independent advocacy is about amplifying the person’s voice and lived experience, ensuring they are at the heart of every decision that affects their life, not at the periphery. We now need a national strategy that reflects this, and the resources to back it up.
Without independent, person-led, well-resourced advocacy, the human rights of disabled people in Ireland remain little more than words on paper. The failure to adequately fund independent advocacy is, in itself, a failure to support their rights. When advocacy is missing, so is accountability and people pay the price.
This report must act as a serious wake-up call and watershed moment for Ireland. As a country, we need to ask ourselves; how many more times must we be told that the voices of people with disabilities are not being respected or silenced?
That’s what the Farrelly report really draws attention to – not just what went wrong in one case, but what continues to go wrong when the system fails to embed the voice of the person at every level.
Grace’s story reminds us of the cost when that doesn’t happen. But there are so many people today still waiting for advocacy, still trying to be heard, still being left out of critical decisions about their own lives.
Ireland has ratified the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), a legally binding international agreement that emphasises the rights, dignity, and autonomy of people with disabilities.
Article 12 of the Convention speaks clearly about the right to be supported in making one’s own decisions and this is where independent advocacy comes in. If we are serious in Ireland about living up to our commitments under the UNCRPD then we must treat advocacy as essential - not optional.
That means investing in a national strategy that ensures that people with disabilities, who require it, have equal access to an independent advocate: in healthcare, social care, housing, education, employment, and justice.
It is time to invest meaningfully in advocacy services for people with disabilities – not next year, not in the next budget, but now. At the heart of true inclusion and equality is independent advocacy, that is led and directed by the person with a disability, that is for the person only, free from conflicts of interest.
It ensures that people’s rights are upheld, and difficult questions are asked when necessary. Independent advocacy isn’t optional; it is a fundamental key to making rights real.
The central role of advocacy is already recognised in Irish law and policy. The Health Act regulations include advocacy as a critical safeguard in health and social care settings.
The Assisted Decision Making (Capacity) Act 2015 – and specifically the Decision Support Service’s Code of practice for Independent Advocates lays out clearly the importance of advocacy in upholding the person’s will and preference.
These frameworks, among others, affirm that independent advocacy is a key part of supporting people to exercise their rights – not a luxury or an afterthought, but a necessity and a practical mechanism through which people with disabilities can exercise their rights in real time, in real decisions, in real lives.
So, the question isn’t whether we value advocacy. The question is whether we’re willing to back it with real investment and a national strategy to make it available to everyone who needs it.
A well-funded, strategic and co-ordinated advocacy strategy would not only uphold Ireland’s obligations under the UNCRPD but would prevent further failures like those exposed in the Grace case.
Independent Advocacy gives people the tools to take back their power. It means fewer people falling through the cracks, as in Grace’s case. With the service framework already in place, what we need is the political will to scale it up – to fully resource and expand advocate numbers, so it can meet the growing and urgent demand.
Advocacy is already recognised in our legislation. Now it’s time to put it to work at the level people deserve.
The lesson of Grace’s story and the silence that surrounded her experience is this; when people are not supported to speak, their rights can disappear entirely. We owe it to Grace and every person with a disability in Ireland, to ensure that never happens again.
In a just society, every voice should matter, especially the ones we’ve too often ignored.
NAS remains committed to standing by and beside people. Let the last unheard voice be the last – let's build a system where every voice counts, young and old, so that the next report we read is of people being empowered, included and never forgotten.
- Joanne Condon, National Advocacy Service for People with Disabilities (NAS) National Manager
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