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ILMI eBulletin November 22nd 2019
We are delighted to welcome you to the 51st Edition of our E-Bulletin

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ILMI Dates for Your Diary
  • November 25th, NDIS ILMI Support Meeting, 12pm - 1pm, Zoom Meeting.
  • November 27th, ILMI #PASNow Campaign Discussion, 11am - 12pm, Zoom Meeting.
  • December 3rd, Temple Gate Hotel Ennis, 11am - 1pm, The Future is Accessible presented by Clare Leader Forum.
  • December 3rd, Galmont Hotel Galway, 7pm - 9pm, The Future is Accessible presented by Galway Activism.
Please call the office on 01 8730455 for more information or email 

ILMI Team News
#PASNow: A Right to Personal Assistance Services

Photo shows ILMI representatives at the Dail Motion James Cawley, Maryam Madani, Shelly Gaynor and Brian Dalton. Back row: Damien Walshe (ILMI CEO), Caoimhghin O'Caolain TD, Joan Collins TD and Thomas Pringle TD. 

On Tuesday 19th November, the Dáíl unanimously agreed a motion put forward by Deputy Thomas Pringle TD on a right to a Personal Assistance Service (PAS) for disabled people. Tuesday night was a huge step in the right direction, but this is by no means the end of the campaign. However, it is a huge step towards real inclusion and independent living for disabled people, based on rights and not charity.
Seeing PAS as a human right and having legislative protection is something the Independent Living Movement has strived for decades to achieve and is based on the work of leaders past and present.

How did we get to a Dáil Motion on the Right to a PAS?
The #PASNOW campaign began last March when ILMI began discussions across the country around what leaders wanted from their PA Services:
  • Define the PAS,
  • Invest in it by ensuring people had the hours they needed,
  • Standardise the assessment,
  • Promote the PAS among disabled people and
  • Legislate to guarantee a right to a PAS as per article 19 of the UNCRPD.
Last September, ILMI held training workshops with disabled people across the country to look at how disabled people could effectively lobby their politicians to bring around change in Irish society. ILMI members locally and nationally began that process of building relationships and raising awareness of what the PAS was and how it needed to be legislated for as a right. Since November last year, ILMI have had several conversations with political parties and independent TDs and Senators about the best approach to bring legislation into the Dáil to do this.
The Centre  for  Disability  Law  and  Policy  at  NUI  Galway  collaborated with ILMI to produce a report on options  for  recognising  the  right  to  personal  assistance  in  Irish  law which we launched with support of Senator Colette Kelleher in the Oireachtas AV room in May this year. This created further awareness of the issue and build more political alliances. At this stage ILMI had offers from two parliamentary parties to explore bringing in legislation as a Private Members Bill (PMB), but Independent TD Thomas Pringle also expressed an interest and given that Indepedents4Change had a greater likelihood of getting a Bill into the Dail before an election would happen ILMI began the process of working with him.
As a member of the Public Interest Litigation Association (PILA), ILMI applied for pro-bono legal advice to draft legislation for a right to personal assistance. Eoin Mac Aodha of Eversheds Sutherland gave a huge amount of his free time to drafting a bill which was then lodged with the Bills Office in October of this year. This Bill was based on work carried out with CIL / ILMI members back in 2013 and drafted to recognise the PAS as a separate service that needed to be provided for as a social support service within the Department of Social Protection and not within the HSE.

Why a Private Members Bill?
A Private Member’s Bill (PMB) is a draft law which is proposed by a single TD or group of TDs rather than by the Government. PMBs differ from Government Bills in several respects; a Government Bill has prior approval from Cabinet and usually is expected to pass without difficulty.
While the aim of legislation generally is to have it voted on and enacted as law, Private Members bills are often used to initiate debate on legislative and policy change. While successfully steering a PMB from publication to the statute book is one way of achieving legislative or policy change, Members use PMBs in different ways and with different objectives, for example:
  • To encourage the government to change policy/legislative approach to an issue;
  • To address a gap identified in the law (either through its passage and enactment or government taking it on board);
  • To bring new ideas into the legislative process and ensure they get a hearing;
  • To respond to topical public and media concerns about an issue and, as such, act as a culmination of the policy debate;
  • To attract publicity and build a campaign for a proposed change in the law.
Normally a TD or opposition party brings a Bill through two stages, and once Government has an outright majority, they can vote the Bill down at second stage. Since 2016 Ireland has had a minority Government which means that more Bills are getting to Committee stage to look at how laws that the Government might support could be enacted. To avoid having opposition Bills become law, the Government has been using article 17.2 of the Constitution to block new legislation by issuing a “money message”.
In working on a cross-party basis, ILMI knew that a money message was always going to be issued on the PAS campaign, but recognised that a debate on legislation was needed and would set the foundations for a future Government to adopt the legislation drafted. It also would create a debate at the highest level in politics about the PAS and Independent Living, and get most parties supporting it in advance of a General Election next year.
However, the rules that govern how the Dáil works (“standing orders”) changed over April this year which further limited the ability of opposition TDs to introduce Bills for debate in the Dáil. None of the TDs we were working with had even heard of Standing order 179 which now means that no opposition TD can bring a bill forward if it proposes to spend taxpayers money "A Bill which involves the appropriation of revenue or other public moneys, other than incidental expenses, shall be initiated by any member, save a member of the Government".

Why bring a Motion on the PAS to the Dáil instead of a Private Members Bill?
The Bill we worked with Eversheds on was about a right to Personal Assistance for disabled people and it clearly involved proposing to spend exchequer funding. Therefore under SO 179 the Bill, which Thomas Pringle TD was bringing with our support was ruled inadmissible.
Deputy Pringle worked with ILMI and the Bills Office to draft a motion which captured the aims of the Bill but which proposed only minimal initial State funding to establish a Commissioner for Independent Living position within the Department of Social Protection and Family Affairs. This compromise was about getting the motion accepted into the Dáil for debate but was also about beginning a process to pave the way for future legislation as well as tasking DSP to explore how the PAS would be transferred and managed.
We found out on Tuesday 12th November that the motion was accepted to be heard on the 19th and with that we began mobilising members to lobby their TDs. The response was fantastic. A huge thank you to everyone who made an effort to contact their TDs and raise awareness of the #PASNOW campaign before the debate. Tuesday night was an historical moment for the Irish Independent Living Movement and one we should all be proud of.

Does the Motion being unanimously mean that everyone now has a right to a PAS?
Unfortunately, no it doesn’t. For disabled people to have a right to a PAS, we need to have legislation enacted, and as outlined above, the current Dáil rules mean only the Government can bring those Bills before the Dáil. The motion was a way of getting as many politicians behind a rights-based approach to disability and Independent Living.
The debate showed that many TDs and parties responded to disabled people lobbying them directly and shows us collective action can work. You can listen and watch to the debate on this link skip to 06:11:00 Private Members' Business (Independents 4 Change): Motion re Right to Personal Assistance Services (Item No. 250).  Alternatively you can read the full text of the debate here.
The next stage for that motion is for Deputy Pringle, ILMI and Eversheds to draft specific legislation to enact a Commissioner for Independent Living which can be brought into the Dáil in January which again gives us an opportunity to garner more support. However, even if this limited Bill is enacted, it is still a far cry from what is needed- but it moves the debate further into the direction of a legal right to personal assistance.
We also have momentum with all parties now. All TDs and all local councillors have been contacted by ILMI and this debate has had an impact. Politicians are now learning about the difference between the PAS and home help. There are allies out there we can work with. We need to build on those discussions and make sure that when there is an election next spring, the new Programme for Government has a commitment to enacting legislation based on the lobbying we have collectively been involved in.

What are the Next Steps in the #PASNOW Campaign
Tuesday 19th was the first step in securing our right to PAS and the fight must continue. In order to look at the next stages of the campaign and roles that ILMI activists can play locally and nationally we will host a short Zoom discussion on Wednesday 27th November from 11am to 12 noon.  It would be great to have as many people as possible participate and if you are available and would like to join in, email Susan.

NDIS Mid-Term Review

Photo shows new a slide from the NDIS presentation on November 13th.

ILMI attended the mid-term review of the National Disability Inclusion Strategy (NDIS) in Croke Park on Wednesday the 13th November. This first round table consultation was for organisations only and allowed representatives to make contributions of what was working, what could be improved within the strategy and what should be prioritised for 2020/2021. The strategy has 114 actions across 8 themes. There was a lot of energy in the room with the benefit of hearing real authentic voices with lived experience.
The Department of Justice and Equality are coordinating this midterm review and are hosting a parallel discussion for disabled people and parents of disabled people, which will take place in the Tullamore Court Hotel on Tuesday the 26th November from 11.00am to 3pm.
ILMI would encourage members where possible to attend and participate in these discussions to influence delivery in the National Disability Inclusion Strategy. In order to facilitate a collective discussion for members who are attending or for those who cannot attend the event on the 26th but who wish to share their thoughts, we will hold a discussion on Monday 25th November at 12 noon. To participate in this discussion please email Susan. This discussion will also inform ILMI's submission to the midterm review of the NDIS. 
To register for the Department of Justice consultation on the 26th, please click here.

Leitrim County Council Housing Linkage Group

Photo shows Leitrim County Council Buildings.

ILMI were active at this week's initial gathering of Leitrim housing, HSE, disability sector and our own representative role as a 100% DPO (Disabled Peoples Organisation) on the County Council's Disability Strategy Housing Committee. Peter Kearns directed the attending Committee members to ILMI's housing policy work by James Cawley. Peter also suggested that the Committee's current draft Terms-Of-Reference (TOR) should be proofed by Values related to ILMI's independent living approach to effective access to housing in disabled adults’ communities of lifestyle choices. Peter will be attending Leitrim's County Council Housing Committee to promote ILMI's approach of continuing to closely build strategic links with the Housing Agency, the National Disability Authority (NDA) and the Dept. of Housing. Peter said that ILMI see the value of working collectively on housing and to raise issues and deal with them strategically.
Peter hopes that the Carrick-on-Shannon based Disability Housing Committee will naturally gravitate to ILMI to identify a need for the collective or the movement of disabled activists to bring these issues at all levels i.e. local, regional and national levels. It is a local Leitrim county chance to represent our north west members and to represent the housing needs of disabled people on local Housing Steering Groups. Peter's presence on the housing committee is also to promote a rights-based approach to housing and support Committee members to change the perception of housing as a charity approach.

ONSIDE Updates

Photo shows some of the Donegal participants with ILMI team members Peter Kearns and Orla Beirne.

Donegal’s first ONSIDE social inclusion workshop's started on the 14th November in the Aura Leisure Centre in Letterkenny. Peter Kearns the project co-ordinator delivered a disability equality workshop to project participants and members of the public. The group enjoyed taking part and are already looking forward to next week. The social inclusion workshops will continue over the next few weeks with guest speakers from a range of different mainstream services e.g.; employment services, rights and entitlements, community banking and social and wellbeing events. If these workshops are something that interests you then please contact Orla to find out how you can get involved.

Photo shows Orla Beirne at the LYIT event.

Orla Beirne, Community Navigator for Donegal, also attended CYPSC Inclusive Training Careers and Lifestyle Fair for young disabled people on Saturday the 16th of November in LYIT. Orla had a stand with information and delivered workshops on the new ONSIDE project throughout the day. Well done to Anne Timony Meehan and Donegal CYPSC for a great event. 


Photo shows some of the Monaghan participants, Brandy Micheletti and Edel McGInley ILMI team member.

Thursday the 14th of November was Week 2 of ONSIDE's 'Social Inclusion Programme' in Monaghan. ONSIDE participants enjoyed an informative health and well-being workshop delivered by Brandy Micheletti from the 'Community Health Synchronisation Project' (CoH- Sync).
The CoH-Sync project aims to have a positive impact on the health and well-being of individuals and communities. It offers participants free and confidential, one-to-one support to develop a personal health and well-being plan to move towards a healthier lifestyle. For more information on the CoH-Sync project in Monaghan please contact Brandy on 087 3311833 or email
Thank you to Brandy and our ONSIDE participants for coming along and making it a great workshop. We look forward to seeing everyone again in the coming weeks!


Photo shows Marie Gilligan with our ONSIDE Co-Ordinator Peter Kearns.

ILMI wishes a big congrats to our Cavan/Leitrim ONSIDE Community Navigator Marie Gilligan for graduating from Sligo St. Angela's NUIG with a Masters in Leadership & Innovation in the Community and Voluntary sector.
Marie's dissertation investigated if the North West Community Sector could set precedence by taking leadership of facilitating a disability equality and sexuality programme for and with disabled adults. Marie's findings highlight the importance of future study and her analysis of the evidence suggested that disability, sexuality and relationships of disabled adults is a grossly neglected area, not just within Ireland but indeed across the world. The findings mirror those from other international literature reviews by disabled academics and provide support for the proposition that disability, sexuality and relationships is grossly and permanently overlooked by disability service provider organisations. Based on Marie's thesis results it can be concluded that the Community Sector should take leadership in facilitating a disability equality, sexuality and relationships programme for and with disabled adults in mainstream community venues.
Peter says "Marie's Thesis proves what we activists knew for a long-time and what our ILMI ONSIDE Community Navigators are encountering through their One-to-Ones at mainstream venues with disabled adults, that the disability service provider sector is not capable of effectively engaging with disabled adults around their sexuality and relationship lifestyle choices". Marie and Peter are planning to deliver at least one ONSIDE border area 8-week programme with disabled adults on sexuality and social inclusion at a Family Resource Centre in 2020. At the end of this unique ILMI ONSIDE workshop-based programme Peter hopes that "participants will feel confident and competent to openly discuss sexuality and disability and its impact on improving intimate relationships in a supportive FRC group environment". Participants will be able to explore building confidence in their relationships and a possible role for IT resources. With Marie's dissertation findings in mind, the ILMI programme will be looking at the possibility of challenging underlying disabling attitudinal issues within disabled adult relationships, as opposed to impairment being the only disabling sexuality factor.
Marie feels that the ILMI programme could provide disabled women and partners with a freedom of choice around intimacy and disability, together with the power to express their own sexuality with & beyond impairment narratives. Peter believes that disabled men & partners will recognise that sexuality and impairments is a subject worthy of discussion and recognition, and not something to be ignored - but celebrated. This initial resource will be available to north west Primary Health and Therapy Centres to refer participants but will always be operating from a local family resource centre (FRC). The reasoning behind this being is that supported discussion of sexuality and disability is a family crisis and opportunity, and a more sustainable response can be achieved as FRCs have access to mainstream tried & tested relationship counselling. Marie and Peter also hope that at the end of eight-week programme participants will have established themselves as a FRC Disability & Sexuality Support group. Going forward they will develop support structures of their own and will start the process of becoming mentors where they will encourage disabled people, their families and the medical profession to take the Social Model on board in recognising that disabled people do indeed have sexual experiences & support requirements.

Donegal TD Bringing Motion for PAS
On November 15th Donegal TD Thomas Pringle explained to the Donegal Democrat why he was bringing a Motion to the Dáil on our right to PAS “I believe this motion acknowledges the fact that it’s society that disables people, not the disability itself and only by introducing a statutory right to disability supports can break down the inherent inequalities that exist in Irish society and allow people to live to their full potential regardless of their disability.” To read the full article please click here

Disabled People in Ireland Need the Right to a PAS
On Saturday our Policy Officer James Cawley explained to The Journal why the Motion on our right to PAS is so important to us all. "It is about equality, and fairness and choice, not dependence or charity...For me I’m a son, brother, uncle, friend, fiancé, co-worker – but I couldn’t take on these roles if I didn’t have a PA. In Ireland, we need the personal assistance service to be enshrined into legislation to ensure I can continue to be all of these things. Disabled people don’t need a hand out – but we do need a hand up sometimes". To read the full article please click here

Today with Sean O'Rourke

On Wednesday ILMI Policy Officer James Cawley and ILMI Member Brian Dalton featured on the Sean O'Rourke show to talk about disability equality and the PAS motion. If you would like to listen back to the conversation please click here

Midlands Radio
On Tuesday morning Paddy Slattery spoke on Midlands Radio about the importance of Personal Assistance Services and what they really mean to disabled people. To listen back to the interview please click here
Share Your Independent Living News

National Accessibility Week 2019 launched on Monday, 25 November

The launch of National Accessibility Week 2019 which will take place on Monday, 25 November in the Foyer of TU Dublin Tallaght Campus. In addition to launching the Week of action, we will also be celebrating the improved access that is now available in TU Dublin Tallaght Campus.
National Accessibility Week (led by local authorities across the country), is an important opportunity to encourage all people to focus on issues of accessibility and universal design. The Week provides Councils, businesses, schools and colleges, community groups and so on with a valuable opportunity to highlight the accessibility of their facilities and services. Various activities and media are also used to encourage wider society to be more inclusive of the varied access needs of disabled people of all ages.
Each year the Week takes place around the 3rd December which is International Day of Disabled Persons. This year National Accessibility Week takes place from Monday, 25 November until Monday, 2 December 2019. For full details of the full National Accessibility Week programme please click here.
For further information on the launch of National Accessibility Week and other events taking place during National Accessibility Week, please contact Selina Bonnie, Disability Liaison, Access and Equality Officer, at South Dublin County Council at 01 414 9041.

Smashing Barriers

Photo shows the Smashing Barriers Poster.

Join the Ballyfermot Chapelizod Disability Action Collective to celebrate the UN International Day of Persons with Disabilities with performances of Dead or Alive, an original play devised by the Smashing Barriers: Drama Collective and theatre-maker Kate Harris.
We are excited to have an opportunity to share this successful model of community-based theatre practice that is made by and for disabled people, and increase visibility of disabled people as creative practitioners and valuable members of our society and whose stories are crucial to how we understand ourselves culturally.  
Along with the performances we are hosting Disability Equality workshops and post-show panel discussions with the actors, disability activists and the Independent Living Movement Ireland.
  • Friday, November 22nd in Rua Red Arts Centre Tallaght 11am-3pm  and 8pm
  • Tuesday, December 3rd in Axis Arts Centre Ballymun 11am-3pm
Programme for November 22nd and December 3rd:
  • 11am: Disability Equality Workshop
  • 12pm: Tea/Coffee/Sandwiches
  • 1pm: Performance Dead or Alive          
  • 2pm: Post-show panel discussion
Can’t wait to join us? Book workshops places and tickets for Dead or Alive at: Rua Red Arts Centre, Tallaght (01) 451-5860 or Axis Arts Centre, Ballymun (01) 883-2100
 For more information contact Maureen at 085-2277033. 

If you wish to get your campaign, key policy article, or any other piece directly relating to the philosophy of Independent Living featured in our next newsletter then please email it to

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