Dear Minister Flanagan,

I’m writing to protest the imminent closure of the National Platform of Self-Advocates and to ask you to intervene to prevent the blow to disability rights in Ireland that this loss represents. Ireland was one of the last state parties to ratify the UN Convention on the Rights of Persons with Disabilities (CRPD); now it seems that we are violating its terms before it has even been implemented.

The CRPD has promised equality for disabled people like nothing before. One of the reasons for this is the leading role disabled people took in the treaty negotiations. This leadership should be embedded in every aspect of the CRPD, especially monitoring of implementation.

There are specific articles of the CRPD that deal with this role, including Arts 4.3, 29 & 33. It is clear that states are expected to actively encourage the participation of disabled people – and specifically DPOs – in all aspects of CRPD implementation.

Since 2011, the National Platform of Self-Advocates has taken part in public consultations, led research, trained practitioners around the Assisted Decision-Making Act, campaigned for housing, homelessness supports, & employment for people with intellectual disabilities, and much more.
We have very few DPOs in Ireland. The National Platform was the first, set up in 2011, and remains the only one representing people with ID. You don’t need to look far into recent scandals (Aras Attracta, forced treatments, abuse) to see why people with intellectual disabilities need their own DPO.
To be clear, a DPO is a disabled persons organisation. It is run by and has a membership of a majority of disabled people. It is not a service provider nor a parents’ group. It is disabled people performing collective advocacy.

The National Platform has always made as much as they can out of small victories. They have encountered amazing allies, excellent supports. Along the way they have also been treated with paternalism, tokenism, have been talked over, excluded and dismissed. Yet they persist.
Their work is innovative. They have created their own norms, their own organisational culture, one that respects all their members and the skills and life experiences each one brings to the group. Their ways work. They educate everyone they work with and their practices should be adopted by all who want to work with them.

Unfortunately, not everyone understands the importance of centring people with intellectual disabilities in participative decision-making processes. Some infantilise and dismiss their experiences and expertise. Some see adoption of inclusive practices as too much work. Others don’t understand why people with intellectual disabilities don’t just get experts to represent them. They know that allowing others to speak for them has never worked and will never work.

I have witnessed all this over the past five years. The Platform has allowed me to follow them as part of my doctoral research, to observe their work, their methods, their relationships. I have learned so much from their generosity and unlearned so many assumptions I held about intellectual disability.
The National Platform has been advised by many to become part of a more established organisation. When the entire history of people with intellectual disabilities has consisted of being hidden, disabled and silenced by others, this is not a move easily accepted. The National Platform has struggled (and succeeded) for years to establish and maintain their organisational autonomy and their independence. To give this up would neuter them. Yet that is the only solution being offered to their current crisis.
Finian McGrath has tried to keep the National Platform afloat this past year and a half with small interim payments. DPOs cannot survive on goodwill. They require stable, predictable funding schemes that are accessible and which place the needs of disabled people at their core. No public schemes currently do this.

Instead, the National Platform is now preparing to withdraw their voice from chambers where their words seem to go unheard. They have been asking for state assistance with this since 2018. Nothing has been offered which accommodates their needs. This is not equality.

I hope you can understand why this band of volunteers is so important to disability rights. They gave hope that DPOs could form, could succeed, could insist on an equal place in decision-making. Now I’m not so sure at all. When we lose the National Platform, we lose an organisation specifically set up to allow Ireland to fulfil our CRPD obligations. If nothing is done to save the Platform, it feels very much like a deliberate act of vandalism against equality and accountability.

I urge you Minister Flanagan to address the looming closure of this DPO and to ensure Ireland fulfils our obligations to actively promote an environment where DPOs can flourish and people with disabilities can participate in all aspects of political and public life.

Thank you for your time.

Emma Q Burns
Doctoral researcher
Centre for disability Law and Policy
NUI Galway

Donna McNamara

Dear Minister Flanagan, I am writing to you as a former constituent to express my deep concern at the news that The National Platform of Self Advocates is being forced to close due to lack of funding. I implore you to consider urgent action in this regard as the...

read more

Tony Gapper

Dear Minister Flanagan, The closure of the National Platform of Self Advocates in January 2020 is simply an outrage, due to alleged funding concerns; which is run by individuals with intellectual disabilities for individuals with intellectual disabilities. For those...

read more

Jyrki Pinomaa – President Inclusion Europe

To Minister for Justice, Mr. Charlie Flanagan The UN Convention on the Rights of Persons with Disabilities (UNCRPD) clearly states that all people with disabilities have the right to be included in the community. The motto of the international disability...

read more

Karen O’Shea

Dear Mr Flanagan From its very beginning the National Platform of Self- Advocates has sought to be an independent voice for people with disabilities and is unique in what it offers in this country. The Platform have researched, campaigned and offered their experience...

read more

Richard Patterson

Dear Minister Flanagan, I am writing in relation to the recent announcement on the day referred to by social model of disability advocates and activists as International Day of Disabled People that the National Platform of Self Advocates “will be closing down [its]...

read more

Charlotte May-Simera

Dear Ministers, I am writing to express my serious concern about the recent announcement of the National Platform that they must cease their activities due to a lack of funding. This is the only independent advocacy organization, established over the last 8 years,...

read more

Edel McSharry

Dear Minister Flanagan, I am writing to you with regard to the National Platform of Self Advocates. As I’m sure you are aware, the National Platform is having to make the decision to close in the New Year, due to a lack of funding. It is essential that this does not...

read more

Disabled Women Ireland

Mr Flanagan, It is with anger and sadness that Disabled Women Ireland learned of the imminent closure of the National Platform of Self Advocates. It is entirely unacceptable that a state which spends a significant amount on “disability issues” fails to find and adapt...

read more

Mark Kealy

Dear Minister, I am dismayed to learn that the National Platform of Self-Advocates have been forced to announce they are ceasing operations from January due to an absence of funding and support for their work. I have been involved with advocacy groups since the 1980's...

read more

Centre for Disability Law and Policy

Centre for Disability Law and Policy, Institute for Lifecourse and Society, Dangan, North Campus NUI Galway. info.cdlp@nuigalway.ie 6th December 2019 FAO: Minister Charlie Flanagan CC: Minister Finian McGrath RE: Letter of support NPSA The Centre for Disability Law...

read more

Adrian Carroll

Dear Minister Flanagan, I am writing to you to express my concerns regarding the impending closure of the National Platform of Self-Advocates, a national organisation led by people with intellectual disabilities to represent the voice of people with intellectual...

read more

Maria Walls

Dear Minister Flanagan, I am deeply disappointed at the lack of on-going funding to support the extremely important work of the National Platform of Self Advocates. Similar groups exist in all other jurisdictions some called People First. They need adequate on-going...

read more

Paula Brennan

Dear Minister Flanagan, I am writing to you with regard to the National Platform of Self Advocates. As I’m sure you are aware, the National Platform is having to make the decision to close in the New Year, due to a lack of funding.  It is essential that this does not...

read more

Shelley Gaynor -ILMI

Dear Minster I am writing to you in relation to closure of National advocacy Platform. As the Former chairperson of Independent Living Movement ILMI. I know firsthand of the importance of having a disabled persons organisation to hear the true authentic voice of...

read more

Helen McGloin

Dear Minister Flanagan, I am urging you to engage with the stakeholders in the true spirit of partnership as suggested below by my colleague Susan Carton and ensure that this service and the valuable network and support is not lost. Best wishes Helen McGloin PhD...

read more

Carmel Jennings

Dear Minister Flanagan, I am writing to let you know of my huge disappointment at the closing down of the National Platform of Self Advocates due to lack of funding. How can you justify this decision? Functioning democracy depends on citizens having equal rights and...

read more

Fiona Walsh

Dear Minister McGrath, I am writing to you to raise awareness of the importance of funding Disabled Peoples Organisations (DPO’s) and especially regarding the position of the National Platform of Self Advocates (http://hsv.digitalclare.com/) which has stated it cannot...

read more

Catherine O’Leary

Dear Minister Flanagan, I write to express my disappointment at the announced closure of the National Platform of Self Advocates, Ireland's only Disabled Persons Organization (DPO) operated by those with intellectual disability. The consultation and involvement of...

read more

Susan Carton

Dear Minister Flanagan, I am writing to you with regard to the National Platform of Self Advocates. As I’m sure you are aware, the National Platform is having to make the decision to close in the New Year, due to a lack of funding. It is essential that this does not...

read more

Sarah Lennon

Dear Minister Flanagan, I am writing to you with dismay at the news that the National Platform of Self Advocates is to close after almost 9 years due to a lack of funding. The Platform has been a critical voice for people with intellectual disabilities in Ireland, a...

read more
Skip to content