Homepage Archives - National Platform of Self Advocates

NAS & the Patient Advocacy Service Annual Report

The Annual Report presents the key activities, statistics and achievements of both Services during a challenging year that was significantly impacted by the Covid-19 pandemic. For people with disabilities, the Covid crisis, its restrictions and the subsequent disruptions to healthcare services, proved particularly difficult. They faced many traumatising and life changing experiences and were among the worst affected groups in Irish society. The pandemic impacted on NAS services too, particularly during the first lockdown. Face-to-face meetings were limited with many service providers focused on the safety of their residents and therefore unable to engage properly with NAS advocates. It was also a demanding period for the Patient Advocacy Service, provided by NAS and commissioned by the Department of Health. The Service provides support to people who wish to make a complaint to the HSE about their care in a HSE-funded public acute hospital or HSE-operated nursing home. The impact of the Covid virus meant that some hospital patients were unable to communicate with their loved ones, families were unable to visit, and medical procedures were delayed. Both Services also dealt with the challenges of working from home throughout most of 2020. The pandemic meant it was impossible for staff to continue to work in their offices. Despite these issues, NAS and the Patient Advocacy Service responded adeptly and effectively to the crisis, adapting their Services and way of working, and embracing new technologies such as video calls and text messaging. They continued to operate as normal throughout the pandemic, providing high quality, professional advocacy support to people across Ireland and supporting them to have their voices heard. In 2020, NAS provided advocacy support in over 3,750 pieces of work, continuing the trend which has seen our casework increase by over 50% since 2015. The Patient Advocacy Service also provided support in over 530 cases in 2020, its first full year of operation.

Easy Read Report NAS 2020

Full Report NAS 2020

Cost of Disability in Ireland

The cost of disability is the extra spending needs that people with a disability face in their day-to-day lives that others in society do not face. These extra costs are a direct result of the person’s disability and would not arise otherwise. Research conducted in Ireland and internationally over many years has shown that there can be significant costs of disability. In order to get a better understanding of the extent and composition of these costs, and the way they affect people differently, the Department of Social Protection commissioned Indecon International Research Economists to carry out research into the cost of disability in Ireland. The result of this analysis gives a range of costs of disability in Ireland. Additional costs of disability go across a number of areas of expenditure including:

Additional living expenses;
Mobility, transport, and communications;
Care and assistance services,
Equipment, aids and appliances, and
Medicines.

The costs vary due to a number of factors, for example, the age of the individual, household type, the ‘nature’ of disability as well as the ‘severity’ of disability.

The Programme for Government commits the Government to use the research into the cost of disability to individuals and families to properly inform the direction of future policy. The findings have implications for many areas of public policy including the delivery of care services, health, housing, education, transport and income supports. This is why a whole-of-Government perspective is needed.

Open Report

Event on the UNCRPD

Learn about the UN Convention of the Rights of Persons with Disabilities (CRPD):

What does it mean for disabled people in Ireland?

An information webinar presented by the Disabled Persons Coalition (DPO Coalition):

Wednesday 27th January, 7pm – 9pm.

You will get information about:

•The Convention and what it means

•How you can engage in the Government’s consultation on Ireland’s Draft State Report

•The DPO Coalition’s planned Shadow Report

Ireland’s Draft Initial State Report under the UN CRPD was published in December 2020 and is open for consultation until March 3rd 2021.

The DPO Coalition is one of four funded Disability Participation and Consultation Network members who will be making a submission on the State’s Draft Report. .

The DPO Coalition is also developing an independent report that ‘shadows’ the State’s report and presents an alternative view of how the State has met its obligations under the Convention.

The DPO Coalition is an alliance of disabled people and disabled peoples organisations (DPOs) which was established in 2020 to develop and submit a report to the United Nations (UN) on Ireland’s implementation of the Convention on the Rights of Persons with Disabilities (CRPD).

Who should attend?

•Disabled people

•Anyone interested in the UN CRPD and its process

•Anyone planning to contribute to the Irish Draft Initial State Party Report If you would like to register email info@ilmi.ie

@abrihouse @IrishDeafSoc @Platformselfadv @AsIAmIreland @DW_Ireland

Inclusion Europe – Irish self-advocacy organisation closing down for lack of funding: “This is truly unacceptable!“

Yesterday, the Irish “National Platform of Self Advocates“, an independent self-advocacy organisation, announced they will be closing down due to a lack of funding.

According to the platform, after having received financial aid by a philanthropic organisation, the self-advocates had tried to get state funding since 2018, but without success: “We have been excluded from public funding streams because of the way our organisation is run. There are no accessible training programmes on how to become the type of organisation that the state will fund. Every solution that has been offered to us has asked us to hand over control of our organisation to non-disabled people, or to lose the independence we have taken years to build. We cannot allow this to happen.” The platform will shut down in January.

Inclusion Europe want to express our solidarity with the National Platform and a strong denunciation of the situation:

President Jyrki Pinomaa stated: “This development is truly unacceptable. States must provide funding for self-advocacy organisations which represent people most likely to be excluded from politics and other areas of decision-making. This turn of events is the ultimate demonstration of a situation where self-advocacy organisations are often the first to lose funding.”

Vice-president László Bercse added: “The UN CRPD clearly states that all people with disabilities have the right to be included in the community. Self-advocacy organisations fight for inclusion. If they stop working, we lose our chance for inclusion and equality. Governments should not let that happen.”

Mairead Boland-Brabazon CEO /Leader L’Arche Ireland

Dec 16, 2019

Letter to Minister Flangan re National Platform from Mairead Boland-Brabazon

Donna McNamara

Dec 14, 2019

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...

Tony Gapper

Dec 13, 2019

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...

Jyrki Pinomaa – President Inclusion Europe

Dec 11, 2019

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...

Karen O’Shea

Dec 11, 2019

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...

Richard Patterson

Dec 10, 2019

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]...

Inclusion Ireland

Dec 9, 2019

Letter from Inclusion Ireland to the Minister for Justice and Equality

Charlotte May-Simera

Dec 9, 2019

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,...

Edel McSharry

Dec 9, 2019

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...

Emma Burns

Dec 9, 2019

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...

Disabled Women Ireland

Dec 9, 2019

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...

Mark Kealy

Dec 9, 2019

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...

Centre for Disability Law and Policy

Dec 9, 2019

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...

Adrian Carroll

Dec 8, 2019

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...

Maria Walls

Dec 8, 2019

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...

Paula Brennan

Dec 7, 2019

Shelley Gaynor -ILMI

Dec 6, 2019

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...

Desmond Aston – INHEF

Dec 6, 2019

This is a pdf of the letter written by Des Aston, chairperson of the Inclusive National Higher Education Forum.

Helen McGloin

Dec 6, 2019

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...

Carmel Jennings

Dec 6, 2019

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...

Fiona Walsh

Dec 6, 2019

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...

Catherine O’Leary

Dec 6, 2019

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...

Susan Carton

Dec 6, 2019

Sarah Lennon

Dec 6, 2019

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...

Letter from the Clare Public Participation Network

Dec 5, 2019

The Clare Public Participation Network sent a letter calling for urgent support for the National Platform of Self Advocates to Minister Charlie Flanagan. This is a pdf of the letter.

Inclusion Europe – Irish self-advocacy organisation closing down for lack of funding: “This is truly unacceptable!“

Dec 4, 2019

Yesterday, the Irish “National Platform of Self Advocates“, an independent self-advocacy organisation, announced they will be closing down due to a lack of funding. According to the platform, after having received financial aid by a philanthropic organisation, the...