Inclusive Research Network (IRN)

The Inclusive Research Network is a group of people with an intellectual disability who come together to do research on ideas and issues that matter to them.  

Inclusive Research Means….

  • Creating a place where people with intellectual disabilities are supported to do their own research. 
  • Sharing Power: People with disabilities are part of decisions at all stages of the project
  • Building a research community in Ireland.

About the Inclusive Research Network (IRN)

  • The IRN offers training to members on how to do Inclusive Research.
  • IRN members make presentations on their findings from their Inclusive Research projects - they present both in Ireland and abroad. 
  • The Inclusive Research Network is supported by National Federation of Voluntary Service Providers, Trinity College  and University College Cork. 
  • The IRN also make submissions to Government on issues that are important to them. 
  • The IRN have one meeting per month on the second Tuesday of every month.
  • The Steering Committee meet the week before to decide what will be on the Agenda. 

Download copies of the IRN reports published to date 

Scroll down to read more about the activities of IRN 

IRN Study - Support to make Decisions

The study is on How are people with a lived experience of an intellectual disability are supported to make their own decisions?  

IRN members have been busy preparing for holding the interviews in order to get feedback for the study.  The interviews were done by IRN members themselves with a IRN helper there should they need any help. 

The handbook explains all the different stages needed to hold an interview and is in 3 parts.  These can downloaded at the links below: 

Two IRN members made a video to explain to people what the IRN Study is about. This video was produced by Brian Donohoe, and Pauline Skehan, with  the support of Rob Hopkins, Clare Inclusive Research Group, and Edurne Garcia, Trinity College Dublin. The Video to Explain the IRN Study can be downloaded here. 

Literature Review, the article published in Revista de Pedagogia, and the accessible version recorded with Derek and Gavin can be downloaded at this link. 

IRN have received Ethics Approval for their project: 

Good news - we have received Ethics Approval from Trinity College. Well done to the Ethics Committee - Christina, Helen, Elaine, Pauline, James and Brian D.  

IRN are busy working on the research project....Support to make decisions. 

  • We are now planning Information Days to explain our project and to invite people to take part. 
  • IRN members and their supporters started having pilots to test the Questions. The Ethics Committee are working very hard on the Ethics Application. 
  • We took time to agree which are the best questions. We want to learn about what support people with ID have when making decisions. 
  • Members had training and role play to learn about Active Listening and to practice asking questions. 
  • The ethics application for IRN’s next research Project is being submitted supported by Nicola Maxwell. Christina, Helen, Elaine, Pauline James and Brian D are working very hard on the Ethics Application. 
  • IRN have agreed the Research Method will be both Photovoice and Interviews. Photovoice means using a photo to tell the story of what you want to say.  This will help people who do not speak as well as others. People that agree to take part in the research will be asked to take photos of decisions they have made. IRN researchers will ask them ask questions about it. 
  • The next IRN Research Project is about finding out 'How are people with a lived experience of an intellectual disability are supported to make their own decisions?'  

The Martin Dooher Award (December 2022) 

IRN agreed to have an award in memory of Martin Dooher. We talked about the wonderful qualities Martin brought to the IRN.  Members agreed that the person who got the award should have some of the above qualities.  IRN were asked to nominate a member for the award. James from Athlone won the award.

Martin Dooher Memorial (July 2022)

IRN member and our dear friend Martin Dooher has sadly passed away.   Christina and Jackie organised a get together for all the people who knew Martin to share memories of him. There was a slideshow of Martin’s Advocacy Work and all of the good work he did.  There was also a Video on Martin’s Life.  We will miss you Martin. 

Newsflash (June 2022) - The IRN have elected their steering committee for 2022-2025. 

IRN members held elections in June to elect the members of the next IRN Steering Committee which will serve from 2022 - 2025. Each candidate gave a short talk on why they wanted to role and why they would be good at it. 

Easy read ballot papers were given to each member and a secret ballot took place.  Brian D and two other IRN members counted the votes and afterwards they announced the new committee members. 

Chair - Brian H 
Vice Chair - Derek 
Secretary - Brian D
Vice Secretary - James 
Joint Treasurers – Christina and Helen
Spokesperson -  Pauline
Vice Spokesperson - Elaine
Global Advocate - Fionn

Read about the Roles of IRN Steering Committee here. 

The new Steering Committee will lead their first meeting on Wednesday 6th July 2022.  

IRN makes a video presentation at IASSIDD Conference (July 2021)

IRN members have taken part in the Inclusive Research SIRG (Special Interest Research Group) at the IASSIDD Virtual Conference and you can watch their video presentation which is called we are now meeting online

Another IRN article has been published (June 2021)

IRN article How we work: reflecting on ten years of inclusive research has been published by the Journal Disability and Society.  You can also download How we Work easy to read

IRN will be presenting at the online IASSIDD Conference in July 2021.  The Inclusive Research Network Poem written by Brian Donohoe will be read at this event.

IRN have voted on the topic for their next Research Study (December 2020)

A electronic private vote was held in December.  The topic with the most votes was In/Equality, Support, Choice & Health was chosen. 

The IRN have been busy during 2020.  Despite Level 5 Lockdown we are using: 

  • zoom meetings,
  • mini meetings in each area around the country,  
  • break our rooms during the big IRN meeting,
  • colour coding presentations,
  • and easy read information,

to help them decide what their next research topic will be.

What will our next Research topic be? (September 2020) 

The IRN have continued to hold their meetings despite the restrictions due to Covid 19.  The majority of the members have been able to learn or be supported to use technology and take part in Zoom calls.  IRN are currently having discussions on the topic they would like to research next.  IRN also hold 'mini' zoom meetings in smaller groups so that everyone can get the chance to have their say.  The members themselves feedback at the meetings. The members will vote on the top 3 favourite topics and like any democracy the topic with the highest votes will win - supporters do not have a vote.

Submission to the Law Reform Commission on Adult Safeguarding (July 2020).   

A group of IRN members made a response to the Law Reform Commission on the Adult Safeguarding document.  Following a request from IRN the LRC developed an easy to read version of their document and members met weekly via Zoom to put together their answers and views in an easy to read document. 

Easy to Read Material (May 2020) 

IRN says it is important for all Government Departments to always develop easy to read material at the same time as their regular documents so that people with intellectual disability can understand what it says in them. We wrote a letter about this and sent it to the Law Reform Commission and they were very happy to listen to our views and developed an easy to read version of the document.


IRN have found a new way of staying connected during Covid19 Pandemic (April 2020)

In March 2020 we were all told by the Government to 'stay home and stay safe' because of Covid19.  This meant we could no longer have our face to face IRN meetings. 

We had to think of new ways of staying connected.  Now most of our members have been suppported to meet over Video Conferencing Zoom.  Members are saying it is great to be able to keep in touch with our friends in IRN and to be able to see everyone during lockdown.  

The IRN responce to Peter Williams article has been published (December 2019) 

IRN was invited to write an article about gatekeepers in research. Some IRN members agreed to write the article together over skype.  This article was a response to another article written by Peter Williams.  The IRN article has been published on the  European Journal of Special Education Needs. We are almost finished working on a easy to read version of this. 

IRN have launched the report on the findings of the Doctors and Us Study (November 2019) 

The IRN launched the findings of their latest study called 'Doctors and Us' on Tuesday 12th November 2019 in the Castletroy Park Hotel.  This study is the fourth major Research Project to be carried out by the Inclusive Research Network and is about people with intellectual disabilities’ positive and negative experiences of visiting their doctor.  We feel the findings will be of great interest to your organisation as the findings can be applied across disciplines. 

You can download a copy of the report here

You can download a copy of the programme here. 

IRN members present at the IASSIDD Conference 2019 in Glasgow (August 2019)  

IRN members Rob, Fionn, Ger, Claire and Jonathon presented on the findings of IRN latest study Doctors and Us at the IASSIDD Confernce in Glasgow. 

IRN members present at the Nordic Network on Disability Conference (NNDR) in Copenhagen, May 2019. 

IRN members Fionn, Jonathon and Nancy have made a presentation on behalf of IRN at the Nordic Network on Disability Conference in Copenhagen.  The presentation was about the How We Work: Report which is a report on the Inclusive Research Network’s way of doing their research projects.  

You can download a copy of the How We Work report here

Newsflash - The IRN have elected a new steering committee - 2019-2022.  


Chair - Michael (see photo) 
Vice Chair - Derek 
Secretary - Brian 
Vice Secretary - James 
Spokesperson - Christina
Treasurer - Helen
Vice Treasurer -  Kathleen
Global Advocate - Fionn

Read about the Roles of IRN Steering Committee here. 

The new Steering Committee will lead their first meeting in March 2019. 

'Our Homes' Article has been published in British Institute of Learning Disabilities (BILD).  

The IRN Article on our previous study 'Our Homes' has been published in British Institute of Learning Disabilities (BILD).  The link to the article can be downloaded here.  

IRN have published their latest report 'How we Work'. 

IRN have published their latest report 'How we Work'. 

This report was put together by a smaller group of IRN members. You can download a copy of this report by clicking on the link above and learn more about us. 

Reports published by IRN

  • Doctors and Us Report - November 2019
  • The Inclusive Research Network 'How we Work' Report ( November 2018)
  • The Inclusive Research Network 'Our Homes' Report - November, 2015
  • The Inclusive Research Network 'Relationships & Supports Study: People with Intellectual Disability in Ireland' 2010
  • The Inclusive Research Network  'Where we Live' Report, 2009
  • The Inclusive Research Network Report
  • Inclusive Research Network Easy to Read Report

Download copies of the IRN reports published to date 

News from the Inclusive Research Network (IRN) 2018

  • The article about the 'Our Homes' research project was accepted for publication is by the British Journal of Learning Disabilities - Brian, Laura and Greg helped with this piece of work. 
  • IRN have finished a report called  "How We Work: The Inclusive Research Network’s way of doing projects"
  • Nancy Salmon made a presentation at a conference in Halifax, Canada, on the premlininary findings of the  "Doctors and us" Project. Brian's voice was recorded into the presentation and it was very well received by the delegates at the conference. 
  • IRN prepared a response to Ireland UNCRPD.
  • The IRN members co-led focus groups in  their own areas. 

IRN members Martin, Fionn and Michael presented at the IDEA conference in the National University of Ireland, September 2018.

2018 got off to a busy start for IRN...

The IRN started 2018 with more Focus Group Training in Trinity College in January.  Members got to practice how to co-lead a focus group through role play.  

IRN received an invitation to go to a European Conference in Brussels in March - Nancy Salmon made the presentation. (Nancy L and Carol Ann helped prepare a presentation).

Nancy L (Chairperson) did a skype interview with a researcher from Boston about Inclusive Research. 

IRN submitted an abstract for a conference in Halifax, Canada. If our abstract is successful we will take part via video link. 

An article is being written for the British Journal of Learning Disabilities about the 'Our Homes' research project - Brian, Laura and Greg are helping with this.  

IRN have started writing an article 'How IRN works'

Work of Inclusive Research Network (IRN) during 2017....

The Inclusive Research Network had another busy year in 2017. The Network had already decided that Health would be the topic for their new project.

  • IRN decided the name 'Doctors and Us' for the project.
  • IRN agreed the research method would be focus groups but with the help of photos.
  • IRN then decided on the questions.  They made them easy to understand.
  • We chose photos to match the questions to help everyone understand what was being asked. 
  • A sub group of IRN met to work on the ethics application which was submitted in early October 2017.  Ethics approval was granted by the University of Limerick.
  • During the year we continued to give presentations on the 'Our Homes' Research project.  Nancy Leddin, Joan Body and Carol Ann O'Toole giving a presentation in Trinity College.
  • The IRN held Focus Group Training for the members on 6th November in University of Limerick. 


IRN hold their first focus group on 'Doctors and Us' project

After the training in November the IRN held the first focus group for the 'Doctors and Us' Research Project. There were six participants made up of IRN members  who wanted to take part. It was co-led by Nancy Leddin (Chair of IRN).  The feedback from the focus group was excellent. 


 

IRN wins Award for Our Homes Poster at NUIG Centre for Disability Law & Policy Summer School June 2017 

The Inclusive Research Poster won the Best Poster Competition at the National University of  Galway Summer School. Brian Donohoe & Christina Burke were presented with first prize on Friday 23rd June 2017 the final day of the Summer School. 

The poster was done on the IRN’s most recent project Our Homes. The event was attended by people of many Nationalities including China, Kenya, Zambia, Iceland and the U.S. There were 36 different posters being exhibited all related to disability projects.

Brian Donohoe and Christina Burke presented the poster on behalf of IRN.  They had hand-out sheets which made it easier for them to explain the poster as they could hand people an A4 sized copy of the poster with the link to the Our Homes Report for people to look up themselves.

The IRN were complimented on their poster for it’s layout, colour and how easy-to-read the poster was and there was a lot of interest in the Inclusive Research Network and how it functions.  All members of IRN recieved a certificate. You can view the Our Homes Poster here.

Work of IRN during 2016  

Our next piece of Research will be on the topic of Health.........

IRN worked together to decide what Research topic they would like to do.   Members have voted that their next research topic will be on 'health'.  The group agreed to hold focus groups as a way of gathering information for their research. IRN members are currently agreeing what questions they will included in the Focus Groups. They also voted to use focus groups and photos as their method of research. Brian, Arthur & Ger counted the votes supported by Edurne.

​Education, Money and Health were looked by the group but the they chose HEALTH. 

The Key to the success of IRN is giving support people and creating a place where people with intellectual disabilities are enabled to do their own research. 

IRN publishes its first Magazine (May 2016) 

The IRN have published the first edition of their magazine called 'Working Together'.  It is a mixture of articles which will tell you more about IRN and it also includes some stories about IRN members. You can download a copy here

The IRN have a elected a new Steering Group (February 2016) 

The IRN have elected a new steering group as the former steering group had been in office for 3 years. All members of the IRN got the opportunity to put their names forward for election with the exception of the outgoing committee members.  However Brian Donohoe stays on as secetary as he is employed by the National Federation of Voluntary Bodies one day per week in this role.


The elections took place at the February 2016 meeting. Before the election of each role every candidate spoke about why they wanted people to vote for them. 

Easy to read ballot papers were given out. Elections took place one role at a time. Each IRN member got to vote. 

The new IRN Steering Group Members 2016-2019 are:

  • Chair - Nancy Leddin 
  • Vice Chair - Joan Body
  • Secretary - Brian Donohoe
  • Public Relations Officer - Fionn Angus
  • ​Treasurer - Laura Murray

Read about the Roles of IRN Steering Committee here.  

Work of IRN during 2015.....  

Our Homes Report 

The Our Homes Report provides an opportunity to present evidence-based research that reflects the voices of people with disabilities, their experiences of moving to new homes and the supports that they received during the transition.  Minister Kathleen Lynch, Minister of State at the Department of Health with special responsibility for Primary Care, Social Care (Disabilities & Older People) and Mental Health, launched the Inclusive Research Network  on Tuesday, 17th November in the Castletroy Park Hotel, Limerick.  The day was inspirational to all involved with the IRN members themselves giving the presentations and running the day. 

You can  now download an electronic version of the Inclusive Research Network 'Our Homes' Report which is a book based on the most recent research project by the Inclusive Research Network. 

The day was inspirational to all involved with the IRN members themselves giving the presentations and running the day. 

Working in groups on the 'Our Homes' Report. 

All members of the Inclusive Research Network helped in analyizing the findings from the research study in a very inclusive way.  Each member got the  opportunity to work in groups and select text and pictures which will go into the Report of the findings. The members discussed how they would like to present the findings agreed to do it in a book with role playof the stories from the research to be presented at the launch.   

The IRN have a designed a new Logo

In September 2015 the Inclusive Research Network designed a logo so it could be more professional when dealing with outside agencies. It was a process of choosing from 5 or 6 different designs and colours. The colours and designs had been worked on by IRN members Christina Burke & Martin Dooher from Galway. The whole group voted on the final design and colour for the Logo. 
 

You can download a copy of the 'Our Homes' Report here.

To find out more about the report and the Inclusive Research Network please read more below......

IRN Projects 2014

The IRN  had a very busy year during 2014 ....

Submission to Government

  • A submission was made to the Department of Justice in September 2014 on the Discussion Paper on Sexual Offences and Vulnerable Persons.

Home & Independence Study

  • The IRN agreed on a topic for research called 'Home & Independence' where people were asked about their experience of both good and bad support which they received while moving from Institutions to Independent Living. 
  • ​Ethics Approval received for Home & Independence Study. 
  • Questions in the handbooks for the study have been agreed by the Steering Committee at a Meeting on March 18th in the University of Limerick.
  • A very successful Training Day for co-researchers took place on 31st March, 2014
  • Handbooks for the Home and Independence Study were developed and sent out to the co-researchers.   
  • Interviews took place during May and data was returned and transcribed during the summer of 2014. 
  • IRN members began the analysis of the 'Home and Independence' Study at meetings in July and October. They broke into small groups. 
  • IRN members hope to have a report on the study during 2015. 

IASSID

  • IRN submitted abstracts on the Home and Independence Study for IASSID Conference and some members attended IASSID and presented on preliminary findings of the study in July 2014 
  • Application was made on 30th April for Funding under the Erasmus+ programme for funding to set up a EuropIRN.  This funding application was successful.  However due to other factors the project was deferred but we hope to continue on with the idea of a European Inclusive Research Network in the future. 

IRN Projects 2013

  • The IRN steering committee had a meeting on 31st October to discuss getting ethical approval for the upcoming IRN study. The easy to read minutes of this meeting will be available shortly. 
  • Representatives from the IRN attended Assisted Decision Making (Capacity) Bill: Consultation Symposium in Dublin Castle on Wednesday 25th September, 2013.  They met with Minister for Justice Alan Shatter TD and spoke about the various aspects of the Bill. The IRN members also gave their submission on the Capacity Bill to the Minister and told him that the Bill was too difficult to read and understand and that and an easy to read version of the Bill must be published. 
  • Over 50 Inclusive Research members discussed the Assisted Decision Making Bill on Thursday 5th September2013. There was a vibrant discussion on the positive and negative aspects of the bill and a commitment was made to write a letter to the Department of Justice seeking an Easy to Read version of the bill. A plan to discuss the bill at local level and an agreement to prepare a submission to the Oireachtas was agreed.
  • The IRN is currently starting a new Research project involving Life Stories. The project is about collecting the life stories of people with disabilities who have made the transition from Institutions through to group homes through to independent living. The IRN members will sift through these stories for examples of good and bad support which helps and hinders people from making such a transition process and how people are consulted.
  • The IRN has held a number of meetings to organise the current project and agreed on the questions to be asked in the survey.
  • Pilots of these questionnaires are currently in progress to ensure the relevant information necessary for the project is being captured.

Research Image Thumbnail0

The Inclusive Research Network Steering Committee

The National Federation of Voluntary Bodies & the National Institute of Intellectual Disability (NIID) have provided leadership, infrastructure and resources for the IRN to date. With confidence growing within the members of the IRN, a new path was developing.  The question now emerged what was the future role of the NIID and FEDVOL going to be going forward. 

In late 2011 & early 2012 two separate meetings were held to plan the future work of the IRN. This included the research and training the IRN would carry out over the following years. At these meetings the IRN decided to form a Steering Group to direct the work of the IRN with the NIID and FEDVOL to play a supporting role. At the second meeting people put their names forward to be members of the Steering G1 untitled.JPGroup.

IRN Steering Group Members:

  • Chair - Patrick Santry
  • Vice Chair - Arthur Sexton
  • Secretary - Brian Donohoe
  • Public Relations Officer - Ger Minogue
  • Vice PRO - Joe McGrath

You can read more about the Steering Group here

Other News from IRN                   

  • Three members of IRN Brian Donohoe, Patrick Santry and Marie Wolfe gave interviews to the British Journal of Learning Disability which will be included in a special article to be published shortly.
  • Plans are currently underway for the IRN to become involved in social media through facebook and twitter.  Adrian Noonan the Public Relations Officer for Seasamh has generously agreed to assist IRN Public Relations Officer, Ger Minogue develop the necessary social media skills to reach a wider audience and promote the excellent work done by IRN.
  • In November 2012 the IRN made a submission to Health Information & Quality Authority on The Draft National Standards for Residential Centres for People with Disabilities.  Patrick Santry, Chairperson of the IRN, wrote a letter on behalf of the group to HIQA outlining their concerns to them. 

What are the Goals of the network?

  • To make links and connections between people with intellectual disability, researchers, university researchers, people from the community and staff in services.
  • To develop partnerships for research projects.
  • To support members to work closely together on common interests and research projects.
  • To listen to people with disabilities and their supporters so that research is useful and aims to make a positive difference in peoples lives.

ear hear listen

  • To support research that includes people with intellectual disability as initiators, researchers, and users of research findings.
  • To increase the number of inclusive research projects being done in Ireland.

Who can join?

  • People with intellectual and or multiple disabilities
  • People with an interest in inclusive research
  • University researchers
  • Staff and members of services
  • Members of self-advocacy groups 
     

link or chain

Reports written by the Inclusive Research Network

  • You can read more about the Inclusive Research Network here
  • The Inclusive Research Network launched the report entitled 'Relationships & Supports Study: People with Intellectual Disability in Ireland'
  • The Inclusive Research Network  'Where we Live' Report can be downloaded here
  • You can download a copy of the Inclusive Research Network Report here
  • You can download the Inclusive Research Network Easy to Read Report here
  • You can find out more about the Research Projects Undertaken By IRN Researchers here
  • You can read more about the National Survey on 'Where We Live' here

 IRN Activities 2012

  • On 17th February, 2012 a meeting was held to discuss the transfer of leadership of the IRN from the National Federation of Voluntary Bodies & the National Institute of Intellectual Disability (NIID) to the IRN members, people with intellectual disabilities. It was agreed that new positions would be created to make the running of the IRN more efficient. The positions agreed were Chairperson, Vice Chairperson, Secretary & Public Relations Officer.
  • Training on 27th April 2012 took place on the work involved with the positions in the steering group. People who were interested in becoming part of the Steering Group were invited to speak on what they could bring to the role.
  • Elections for members of the Steering Group took place on the 6th July 2012 and the IRN Steering Group was formed.
  • IRN Training Day took place on 6th September 2012 in Trinity College Dublin to help the steering group and the IRN members lead the IRN into the future and explore what support they needed. They also had a discussion on what research question/topic they would research in the coming year.
  • In the afternoon IT training took place and there was a discussion on the benefits and drawbacks of the IRN having a Facebook Page. Opinion was mixed and after some discussion about privacy this group decided that they would bring the discussion to the wider IRN group at a later stage.
  • In November 2012 the IRN made a submission to Health Information & Quality Authority on The Draft National Standards for Residential Centres for People with Disabilities.  Patrick Santry, Chairperson of the IRN, wrote a letter on behalf of the group to HIQA outlining their concerns to them. 

IRN Activities 2011

  • Two PATH workshops took place in September 2011 and November 2012To find out what was important to the members of IRN and to find out what they wanted from IRN. The PATH facilitators made a graphic chart which helped the members plan their goals, how they could achive these goals and the supported needed to do this.  
  • Members of the IRN attended a round table discussion on reform of the sexual offences act held in the offices of the Law Reform Commission in March 2011.
  • IRN members made a presentation at the Pavilion Conference on Sexuality in February 2011 and at the Scottish Consortium of Learning Disability’s conference June 2011. 
  • Read more about IRN achievements July 2011. 

 IRN Activities 2010

  • A Report on the Inclusive Research Network was launched on February 25th 2010 - a copy can be downloaded here
  • You can download a copy of the Easy to Read Report on the Inclusive Research Network here
  • Report on 'Where we Live' Project was launched by the Inclusive Research Network on 25th February 2010
  • IRN members made presentations at the National Self Advocacy Conference held in November 2010, and at the IASSID European Symposium in Rome October 2010.

IRN Activities 2009

  • You can read more about the IRN Event June 2009 during which members presented their own research and Prof Roy McConkey made a presentation on the benefits of inclusive research for people with disabilities.  
  • The IRN made a presentation at the NDA Conference in October 2009. 

IRN Activities 2008

  

National Institute for Intellectual Disability (NIID)

For further details about the Inclusive Research Network check out the NIID web page.


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