NAS & the Patient Advocacy Service Annual Report

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.
Cost of Disability in Ireland

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.

Have your say about Disability Rights in Ireland

The UN Convention on the Rights of Persons with Disabilities (CRPD) is an international human rights treaty which aims to protect the rights and dignity of all disabled people. Ireland has signed up to the UN CRPD and has agreed that disabled people should have the same support and treatment as everyone else.

Because Ireland signed the Convention it must send reports to the UN Committee on the Rights of Persons with Disabilities to say how they are making the lives of people better.

The first report from the Irish Government is now due. This is called a State Party Report.

A group of organisations made up of disabled people will also give the Committee a report. This group is called the DPO Coalition and their report is called a Shadow Report. This report will give information on how well the Government has done in ensuring people enjoy their human rights.

The National Platform is a member of the DPO Coalition.

We want to know what your life is like and what you think the Government should do to make sure people get their human rights.

We have created a survey to make it easy for you to tell us what your life is like. You can also tell us what you think the Government should do to make sure people have their human rights.

This survey is a chance for you to give us feedback on your life. The survey asks questions about different areas of your life. The answers you give will help us write the Shadow Report.

You can choose to fill in the whole survey or you can pick the sections that are important to you.

The information you give us is private. You do not have to give us your name.

There are three parts to the survey. 

What is the DPO Coalition?

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

@abrihouse @IrishDeafSoc @Platformselfadv @AsIAmIreland @DW_Ireland

Dermot Lowndes in the Irish Times

Dermot Lowndes in the Irish Times

Thousands will not be able to vote on Saturday, expert warns

‘There is a complete lack of awareness about the barriers thousands of people face’
Thu, Feb 6, 2020, 13:24 Updated: Thu, Feb 6, 2020, 13:25
Kitty Holland Social Affairs Correspondent

Shelly Gaynor, from Swords and Dermot Lowndes, from Fairview, in the IHREC offices, speaking about the barriers facing people with disabilities when going to vote. Photograph: Dara Mac Dónaill / The Irish Times

Thousands of people will not vote on Saturday because they cannot – whether due to disability, illiteracy, infirmity or because they have never been shown how to, a voter inclusion expert warns.

Bernie Bradley, social inclusion officer with Monaghan County Council and member of the disability advisory council with the Irish Human Rights and Equality Commission, says there is a “huge hidden cohort of people” not voting because they can’t access their right.

“Not voting is seen by many commentators as apathy but there is a complete lack of awareness about the barriers thousands of people face.”

There are people with mobility issues who need assistance getting to the polling station; wheelchair users who might have access to the polling station but not the room where the voting is taking place because the door is too narrow; visually impaired people who can’t see the type on a ballot paper and people who struggle to hold a pencil.

“Low literacy is a hugely private issue,” she says, though it can be widespread, especially among older people. She believes many thousands of people with intellectual disabilities do not vote because they have not been supported to register to vote.

It is the State’s responsibility to uphold people’s right to vote, she adds.
Polling station staff, or a “polling companion”(friend or family member over 16) can help a person to vote, including helping them fill in the ballot paper.
“All polling station staff should offer everyone help regardless of whether they look as if they need it,” says Ms Bradley, as some people may not know to ask for help.

She cites one elderly man who voted all his life but developed a hand tremor. He continued going to the polling station every election hoping he could steady his hand to fill in the ballot, but couldn’t. Rather than ask for help he put a blank ballot paper in the box for several years until he was, during a recent election, offered help filling it in.

“A big publicity push is needed to tell people they will be helped at the polling station if they need it. If the process is accessible more people will engage.”
All polling stations should be wheelchair accessible; should prominently display a large poster-size version of the constituency’s ballot paper for visually impaired people to use as a guide; tactile ballot-papers for the visually impaired, a low polling booth for wheelchair users, extra seating for frail or tired people to rest, and a ballot-box accessible to wheelchair users.

Voters who need assistance can avail of companion voting or they may seek the assistance of the presiding officer, a spokesman for the Department of Housing and Local Government said.

A group established in 2018 by Minister of State for Local Government, John Phelan was “working on improving accessibility to polling stations for voters with physical disabilities, particularly wheelchair users, with the goal of all polling stations being fully accessible as soon as possible”.

Shelly Gaynor (40), living in Swords, Co Dublin, has cerebral palsy and uses a wheelchair. She has been registered to vote since she was 18 and has always exercised her right, though it has been challenging sometimes.

“Electronic voting though was a disaster for me,” she says. In the 2002 general election e-voting was piloted in three constituencies including hers – Dublin North.

“I had to get two big men top lift the machine down from the table so I could reach the button. They just didn’t think about wheelchairs when they were designing it.”
She is lucky she says to have a personal assistant, with 12 hours’ cover a day. “They are very hard to get. That is one of the major issues for people who want to vote but don’t have a PA to get them to the polling station. Then when they do they may not [be able to] physically access the booth.

“Transport is an issue. In Dublin it’s not too bad but I can only imagine what it’s like in some parts of the country. To even access to a bus once it arrives, can be a nightmare.”

She does not believe all local authorities are attuned to the needs of people with disabilities when it comes to voting in elections and referendums.
“If you physically cannot go out to vote; if you haven’t been told about the postal vote; if you can’t get into the room where the polling booths are, you can’t vote.”
Dermot Lowndes (61) too has been registered to vote since he was 18 though “missed out on voting” in the European and local elections last year because he had moved constituency and hadn’t realised he needed to change his vote.
He has a mild disability and lives in his own accommodation provided by St Michael’s House, in Fairview, Dublin.

“There are lots of rights for people with disabilities but a lot of people with disabilities don’t know their rights. They mightn’t understand. You need easy-read information. Candidates should put out their leaflets in “easy-read” [format].”

Asked about the issues he would like addressed, he says: “More housing and more jobs for people with a disability”. He pays rent and works one day a week. “If you want to go out for the pictures or a few pints, it’s expensive. Money can be very tight.”

Desmond Aston – INHEF

Desmond Aston – INHEF

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...

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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...

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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...

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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...

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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]...

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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,...

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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...

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Emma Burns

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...

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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...

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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...

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Centre for Disability Law and Policy

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

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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...

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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...

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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...

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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...

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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...

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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...

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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 ( which has stated it cannot...

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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...

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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...

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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...

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