ILMI eBulletin December 2nd 2022

ILMI Logo Independent Living Movement Ireland. Freedom Rights Empowerment

ESRI Research on disabled people’s experience of the Personal Assistance Service (PAS) was released today.

ILMI welcomes the research which amplifies messages that have come from disabled people about the need for a PAS that is resourced and legislated for to give disabled people choice and control over their lives.  “Personal Assistance Services in Ireland: A Capability Approach to Understanding the Lived Experience of Disabled People” is part of an ESRI-National Disability Authority (NDA) research programme to explore important issues facing disabled people in Ireland today.

This research continues to show the positive impact a proper Personal Assistance Service (PAS) can and does have for many disabled people in Ireland, but importantly highlights that the lack of investment in real PAS has effectively confined many disabled people to their homes due to their lack of PA hours. The report also documents that many disabled people were reliant on unpaid support from family and friends. Like many ILMI consultations and peer spaces on PAS, the report shows not only were disabled people concerned over the number of hours, but also for greater control over when and for what their HSE-funded hours could be used.

The research also showed a well-resourced PAS was vital for many disabled people to enter and succeed in employment and education. The lack of standardised approach to PAS means that the report shows what PA hours are not widely used for either. This was partly a result of explicit direction from some service providers and from the HSE in some areas that PA hours could not be used for employment, partly due to an overall shortage of hours and partly to do with issues finding PAs with the skills needed in the workplace or learning environment. The impact of lack of hours also shows how it increase isolation and reduces opportunities for social engagement.

The research not surprisingly points to a significant appetite for change among PA service users and makes clear the impact of inadequate support across their lives.


Started in 2018, the ILMI PAS NOW campaign has highlighted the need to define, standardise, invest, promote and legislate for PAS.

Linked with many of the ILMI #PAS NOW campaign objectives, the research makes strong policy recommendations which will have implications for the Department of Children, Equality, Disability, Integration and Youth (DCEDIY), the HSE, politicians and service providers. The research notes that PAS f expenditure is a small fraction of the state’s spending on disability services. The report notes the need for standardising and defining PAS across the county, and development of best practice guidelines to ensure disabled people have control over their service.

The report notes that policy on PAS needs to be informed by the lived experience of disabled people through Disabled Persons Organisations (DPOs)

More information
The ESRI press release can be read here 
You can read the ESRI research here

The ILMI PAS NOW campaign leaflet can be read here

ILMI’s Achieving a Right to Personal Assistance and the word version

ILMI’s PAS NOW webinar which details the campaign work, including lobbying to have motions passed in each local authority to pass motions to recognise a right to PAS

Morning Ireland and the ESRI Report

Eileen Daly who is an ILMI member speaks eloquently on the value of having a Personal Assistant  and what the service means to her. Commenting on the timely and valuable ESRI report published today  Eileen said “As human beings, as people we all need support to live. I don’t need “care”, I need support and Assistance to live the life I want”. Eileen also powerfully underpins everything by encapsulating what we all want while also making a comment on the state of play, the reality for many people. “We want to be Equal citizens in an Equal Ireland, if such a thing exists!”

Eileen’s piece on Morning Ireland is here titled  “Some disabled people confined to homes due to lack of assistance”. Plus Dr Eamonn Carroll, a post-doctoral researcher for the Economic and Social Research Institute (ESRI), who along with Selina McCoy created the survey of disabled people in receipt of personal assistance.

Sligo DPO

IMAGE: photo shows group of 5 people seated and smiling

ILM’s Peter Kearns and Claire Kenny facilitated the third HSE consultation with Sligo DPO by means of a SWAT analysis, Sligo DPO examined “what does the HSE needs to make participation dialogue effective for and with disabled people in Sligo”. This will inform the development of a guidance document currently being developed by Inclusion Ireland and ILMI. Thanks to all that attended looking forward to future meetings.

Disability Equality and Music Making

IMAGE: photos show a group of 15 young people standing in a circle and the ILMI banner in the background.

As part of a week of events to mark UN International Day of Disabled Persons, NOISE Music and Independent Living Movement Ireland launched a series of partnership programmes with an event in Tallaght Library today Friday 2nd December.

The room was full of vibrant young people eager to take their first steps via workshopping to learning about disability equality with ILMI’s Peter Kearns, Claire Kenny and Dr James Casey.

Followed up by some DJing and Beat Making with members of the NOISE Music Collective.

NOISE Music & Independent Living Movement Ireland workshops in Tallaght Library was part-funded by South Dublin County Council’s Social Inclusion Unit as part of the Social Inclusion Festival.

SFC Project update

IMAGE: Zoom screenshot of group

Last Monday evening we had Bernie Bradley from the Irish Human Rights and Equality Commission come and talk to our members of our Strategies for Change Activism Working Groups about the importance of using the Public Sector Duty in their activism work.

The Public Sector and Equality Rights Duty is a proactive duty which states that all public bodies (organisations that are funded by the State) must eliminate discrimination, promote equality, and protect the human rights of its staff and customers

Some examples of public bodies include the HSE, the National Transport Authority, The Central Bank, our Garda Síochána, Local Co. Councils, Schools and Colleges.

Under this duty all public bodies must Assess, Address and Report on progress in relation to Equality and Human Rights in both their strategic plan and annual reports in a manner that is accessible to the public, this includes disabled people.

Hence they must consult with us (disabled people) in relation to:

•         Identifying the key human rights and equality issues that we face in relation to the services they provide?

•         Ask us what they need to do in relation to addressing our issues.

Of interest to our three Activism Working Groups involves looking at the Public Sector Duty in relation to the:

•         HSE – very out-dated application of the Primary Medical Cert. The re-application of the Parking Badge for disabled people via the IWA and the Disabled Drivers Association.
For Your Information – know that within the HSE there is a National Office for Human Rights and Equality Policy  more information about this office.
•         The monitoring of Disabled Parking Bays – Local Government

•         Accessing ATM’s with a particular interest to those with visual impairments – of relevance here is the Central Bank. However some banks have deployed some of their ATM’s to non-financial institutions and so are not subject to the Public Sector Duty but there is talk about changing this

•         Accessing Accessible Taxis – of relevance here is the National Transport Authority

Marking 30 years of Independent Living in Ireland
ILMI’s Freedom and Choice Series in Oct:  Adolf Ratzka is here
ILMI’s Smashing it Series in Nove – Mat Fraser in conversation with Catherine Gallagher

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