UCD Centre for Disability Studies   ‌ 

The UCD Centre for Disability Studies was founded in 1996 under the name ‘The Centre for the Study of Developmental Disabilities’. Inspired by developments in the United States, the Centre is Ireland’s first university-affiliated disability centre. By 2002, the Centre’s activities beyond the field of developmental disabilities were recognised in a rebranding of the Centre as the UCD Centre for Disability Studies, a development that also recognised the appointment of the then Director, Prof Patricia Noonan Walsh, as the NDA Chair in Disability Studies, the first and only professorial disability Chair in Ireland. In 2005, the Centre joined the School of Psychology.

Associate Professor Christine Linehan, current Director of the Centre, and Associate Professor Suzanne Guerin, Deputy Director, now lead the Centre. Activities include a national and international portfolio of multi- and inter-disciplinary research, teaching, training, and public engagement seminars that aim to develop our understandings of disability. These activities explore the nature of disability, the impact of disability on people with disabilities, their families and wider social context, and how services can meet the needs and maximise the potential of people with disabilities and their families.

The UCD Centre for Disability Studies contributes to both undergraduate and postgraduate teachings in disability.

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Appointment of Associate Professor Christine Linehan as Chair of the International League against Epilepsy’s Task Force on Intellectual Disabilities 2022-2025.

The Centre is delighted to announce the appointment of Director Christine Linehan as Chair of the International League Against Epilepsy’s Task Force on Intellectual Disabilities for the period 2022-2025.  Christine has been member of this Task Force for the periods 2014-2017 and 2018-2021.

Screenshot of the IDTF page showing photos of the members

The International League Against Epilepsy (ILAE) was founded in 1909 and includes representation from over 120 national chapters. It is the world's preeminent association of health professionals and scientists working toward a world where no person's life is limited by epilepsy. The Intellectual Disability Task Force aims to create awareness and conduct research addressing the specific needs of individuals with intellectual disability who have epilepsy. Christine is a co-author of the Task Force’s ‘White Paper on the Medical and Social Needs of People with Epilepsy and Intellectual Disability’.

Recording available for webinar ‘Connecting locally: recognising the facilitators and overcoming the barriers to the social inclusion in neighbourhoods of adults with intellectual disabilities’

9 of the participants of the Connecting Locally Webinar in a 3 * 3 tile view from Zoom

Over 200 delegates attended our webinar ‘Connecting locally: recognising the facilitators and overcoming the barriers to the social inclusion in neighbourhoods of adults with intellectual disabilities’ on September 29 2021.

This webinar, jointly hosted by the UCD Centre for Disability Studies and the National Federation of Voluntary Service Providers, showcased the findings of Dr Geraldine Boland’s doctoral thesis conducted in the Centre under the supervision of Prof Suzanne Guerin.

We are delighted to share a recording of the webinar which can be accessed at https://youtu.be/_mDcvnQCPtM

The recording includes a welcome by Associate Professor Christine Linehan, Director of the UCD Centre for Disability Studies, and presentations by Minister for State for Disability Anne Rabbitte TD, researcher Dr Geraldine Boland and self-advocate Breda Cross. These presentations are followed by a panel discussion hosted by Dr Alison Harnett CEO National Federation of Voluntary Service Providers including panelists: Dr Geraldine Boland, UCD Centre for Disability Studies; Ann Mealy, National Lead for Disability Day Services HSE; Selina Doyle, CEO St Patrick’s Centre Kilkenny; Breda O’Neill, CEO IRL IASD; Anne Keenan CEO Cumas New Ross; and Eilin dePaor, Clinical Manager St Michael’s House and doctoral candidate at the UCD Centre for Disability Studies. The discussion was closed by Michael Hennessy CEO of the Brothers of Charity and Chair of the National Federation of Voluntary Service Providers.

We extend our thanks to all involved, notably key speaker Dr Geraldine Boland, our colleagues at the National Federation of Voluntary Service Providers, our ISL signers Caroline Corrigan and Michael Feeney and IT specialist Ali Warner.

Connecting locally: recognising the facilitators and overcoming the barriers to the social inclusion in neighbourhoods of adults with intellectual disabilities.

Poster telling people to save the date

Webinar - Tuesday 28th of September 10 am to 12 noon

This free webinar will share recent Irish research findings that identify effective supports for adults with intellectual disabilities to become socially included in their neighbourhoods/localities.

Dr Geraldine Boland, UCD Centre for Disability Studies will present the results of Irish research studies on adults with intellectual disabilities connecting to people and places in their neighbourhoods. The policy and practice implications of the results of a national survey of Irish service providers will be discussed at this interactive webinar.

Who is this for?

  • Service leaders (including CEOs/ Directors of Services)
  • Service Managers

  • Multi-disciplinary clinical staff

  • Specialist social inclusion staff

(Note: another webinar will be hosted for people with lived experience and family members.)

How will places be allocated?

The above staff from Irish service provider organisations for adults with intellectual disabilities are invited. Places are limited and will be allocated on a first-come, first-serve basis. Enquiries to: geraldine.boland@ucdconnect.ie

 

Launch of MSc in Disability

The UCD Centre for Disability Studies is delighted to launch our one-year MSc in Disability. The programme is developed for all who have an interest in disability including individuals with disabilities, family members and professionals. The philosophy of the programme is to promote an inclusive society respecting the will and preference of persons with disability. The programme includes six mandatory (core) 10 credit modules which provide students with a critical understanding of disability identity, intersectionality, policy and legislation as well as practice-based skills in research methodologies, behavioural support and programme development. Students select an additional 30 credits from a suite of disability-related modules specialising in education, health, law, psychology, public health and social policy. Further information on the programme can be accessed here

  

Recent Adjunct appointments at the UCD Centre for Disability Studies

During the pandemic the UCD Centre for Disability Studies has been busy and growing in number. We are delighted to welcome our new adjunct colleagues.

Adjunct Associate Professor Gail Birkbeck

GailBirkbeck

Adjunct Associate Professor Gail Birkbeck is a research psychologist working in the field of monitoring, evaluation, research, and learning, and was formerly Head of Strategic Learning and Evaluation at The Atlantic Philanthropies for 13 years where she was responsible for the design and implementation of their evaluation and learning strategy. Most recently, she acted as Research Data Coordinator on the UCD Centre for Disability Studies’ HRB COVID-19 study: a global survey of caregivers’ perspectives of the impact of COVID-19 on caregivers and the people they support, and is now undertaking further studies in data management and the wider life of research data

 

Adjunct Assistant Professor Geraldine Boland

GeraldineBoland

In December 2020, Adjunct Assistant Professor Geraldine Boland completed her PhD under the supervision of Professor Suzanne Guerin, UCD School of Psychology, entitled ‘Connecting locally: Examining the factors that support the social inclusion in neighbourhoods of adults with intellectual disabilities’. The American Association on Intellectual and Developmental Disabilities (AAIDD) recognised a component study of her thesis with an award for academic excellence (see news item below for further details). Dr Boland's former practice experience includes a range of leadership roles in services for people with both physical and intellectual disabilities, including Social/Community Worker, Residential Services Manager, and Staff Training and Development Manager for St. Michael's House Services in Dublin. Dr Boland brings a commitment to social justice and equality to her research work. She is interested in real world research, with effective knowledge transfer that leads to transformation in both policy and practice.  

6th European Congress of the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD)

The UCD Centre for Disability Studies was well represented at the 6th European Congress of the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) hosted in July 2021. A summary of each of these presentations can be accessed from the congress abstract book, published by the Journal of Applied Research in Intellectual Disabilities (Volume 34, Issue 5). The abstract book is publicly available and can be accessed at this link https://onlinelibrary.wiley.com/journal/14683148

Professor Suzanne Guerin, Head of UCD School of Psychology and former Director of the UCD Centre for Disability Studies, delivered a symposium on a model of key working for use in a children and young people’s disability service in conjunction with Maria Nolan, St Michael’s House and the Group Key Working Steering Committee. Presentations included: ‘Developing a model of key working for use in a children and young people’s disability service’, ‘Staff experiences of a new model of key working for use in a children and young people’s disability service’ and ‘Parents’ experience of a new model key working for use in a children and young people’s disability service’.

Dr Geraldine Boland, who completed her PhD thesis under the supervision of Professor Suzanne Guerin, delivered two presentations on her doctoral work: ‘The role of service providers in supporting social inclusion in neighbourhoods of adults with intellectual disabilities’ and ‘Connecting locally, do non-disabled adult siblings have a role in supporting social inclusion?’

Keynote address IASSIDD 2021 zoom screenshot

Associate Professor Christine Linehan, Director of the UCD Centre for Disability Studies, was an invited discussant at the Keynote Debate ‘Covid-19’ with Luk Zelderloo, Secretary General of the European Association of Service Providers for Persons with Disabilities, Dr Esther Bakker-van Gijssel, Department of Primary and Community Care, Radboud University Medical Centre and Hanna Blom-Yoo, and daughter Jasmijn, a theologian and human rights activist. The Covid-19 theme continued in a symposium chaired by Christine which detailed findings from a HRB funded research, led by the UCD Centre for Disability Studies, which explored staff and family members’ perceptions of the impact of the Covid-19 pandemic on people with intellectual and developmental disabilities and their caregivers. Co-authors on this symposium included our 26 co-researchers representing 18 countries: Val Bradley (presenter), Henan Li (presenter), Tal Araten-Bergman, Jennifer Baumbusch, Julie Beadle Brown, Christine Bigby, Gail Birkbeck, Femmianne Bredewold, Michael Brown, Masauso Chirwa, Jialiang (Angela) Cui, Marta Godoy Gimenez, Tiziano Gomiero, Šarka Kanova, Thilo Kroll, Mac Maclachlan, Brigit Mirfin-Veitch, Jayanthi Narayan, Niki Nearchou, Adam Nolan, Mary-Ann O'Donovan, Flavia Santos, Jan Šiška, Tim Stainton, Magnus Tideman and Jan Tossebro.

Photo IASSID Roundtable hosted by Gail Birkbeck

Sharing her experiences as Data Manager on this project, Adjunct Associate Professor Gail Birkbeck chaired a roundtable entitled ‘Data management in disability research: Are you getting the most from your data?’ which generated significant interest and discussion from disability researchers navigating the requirements of open publishing and archiving of data.

Associate Professor Christine Linehan also delivered a presentation, co-authored with Gail Birkbeck and Adam Nolan in a symposium on epilepsy and intellectual disability, entitled Pandemic experiences: Not good, just bad and ugly. This symposium was chaired by Professor Rohit Shanker and was co-presented with Dr Francesca Snoeijen-Schouwenaars.

Dr Flavia Santos, in addition to her contribution to the Covid-19 research above, delivered a number of presentations including ‘Disability mainstreaming and inclusion in development and humanitarian practice in Ireland’ with Charlotte Thumser; a presentation on aging ‘Impact of healthy ageing interventions for elders with intellectual and developmental disabilities’ with Johanna Zurek and Matthew Janicki; and ‘Neurocognitive assessment in adults with Down Syndrome and other intellectual disabilities’ with Andreia Paiva, Adam Nolan and Charlotte Thumser.

While we all regret that it was not possible to travel to Amsterdam, which was the original location for this congress, we are delighted to showcase our research and look forward to IASSIDD’s World Congress which will be hosted in Chicago in 2023.

 

UCD Centre for Disability Studies celebrates Dr Geraldine Boland’s success at the American Association of Intellectual and Developmental Disabilities (AAIDD) 2021 Conference.

 

In June 2021, Dr Geraldine Boland delivered an oral presentation at the American Association on Intellectual and Developmental Disabilities (AAIDD) conference entitled Connecting locally: An examination of the role of service providers in supporting the social inclusion of adults with intellectual disabilities in their neighbourhoods. Dr Boland presented findings from a national study involving Irish CEOs/service leaders for adults with intellectual disabilities.  This research was awarded the prestigious AAIDD Leadership and Management in Community Living Interest Network Award for academic excellence. Geraldine was offered a student/early career professional scholarship to attend the conference.

This research is one of three component studies from Dr Boland’s doctoral thesis completed in December 2020 on social inclusion in neighbourhoods of adults with intellectual disabilities, supervised by Professor Suzanne Guerin. The support is acknowledged of the National Federation of Voluntary Service Providers in promoting this research on service supports for social inclusion.  Dr Boland and Professor Guerin are grateful to the 40 service leaders who participated in the study and to Orla Gallagher, PhD student for support with data analysis. Geraldine will be hosting an online webinar on this research later in the year which will be advertised on this website and via social media.

For further information contact: geraldine.boland@ucdconnect.ie    Twitter:@gmboland1

  

Launch of Excelling in Life with Down Syndrome
Prasher and Santos Book cover

The UCD School of Psychology and the UCD Centre for Disability Studies are proud to announce the launch of "Excelling in Life with Down Syndrome" edited by Vee P. Prasher and Flavia H. Santos.

The aim of this book is primarily to educate families, carers and professionals that people with Down syndrome can achieve excellent well-being in physical, mental and spiritual domains. One’s ability to maximize their own well-being is a human right which also reduces risks and costs associated with mental illness. This book highlights the importance for children and adults with Down syndrome to be seen as valued citizens of their community and allows their voices to be heard.

Further details of this book are available at https://novapublishers.com/shop/excelling-in-life-with-down-syndrome/

 

Rising star, Ad Astra fellow and Assistant Professor Flavia Santos

Dr Flavia Santos

Ad Astra Fellow and Assistant Professor Flavia Santos has been selected as a ‘rising star’ of UCD by the UCD Institute of Discovery. This article outlines Dr Santos’ research programme in mathematics and music, showcasing the originality and real-world impact of this research. The UCD Centre is delighted to see this fine recognition of Dr Santos’ work.

"Flavia Santos (pictured) is an Ad Astra Fellow and an Assistant Professor at the UCD School of Psychology. A cognitive neuroscientist, she recently established a research group called UCD Music and Math Cognition. This group will explore music science, numerical cognition and mathematics anxiety and design and provide evidence-based interventions for children with Developmental Dyscalculia, such as computerised tasks, digital games and musical elements.

For those of us fortunate enough to be educated, a base level of numeracy is something we take for granted. Dr Flavia Santos is still amazed, many years later, to recount the story of a woman in Brazil who once needed Flavia’s help with a most rudimentary maths problem." Read the rest of the profile  

Report: The Status of Disability Mainstreaming and Disability Inclusion in Development and Humanitarian Practice.

The report was based on Charlotte Thumser master thesis' (Master of Public Administration in Development Practice) under the supervision of Dr Flavia Santos at University College Dublin in collaboration with Dóchas, The Association of Irish Non-Governmental Development Organisations. 

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Cover of report on Disability Inclusion & Development

 

Book Launch: Mental Health, Intellectual and Developmental Disabilities and the Ageing Process

The UCD Psychology and the UCD Centre for Disability Studies are proud to announce the launch of the book: "Mental Health, Intellectual and Developmental Disabilities and the Ageing Process [] 

Cover of the book Mental Health, Intellectual and Developmental Disabilities and the Ageing Process

 

Launch of International Survey documenting the Impact of COVID 19 on Individuals with Intellectual and Developmental Disabilities and Caregivers

The UCD Centre for Disability Studies is delighted to announce the launch of our international survey documenting the impact of COVID 19 on individuals with intellectual and developmental disabilities and their caregivers.

Our survey is funded by the Health Research Board and is led by the UCD Centre for Disability Studies where we lead a team of 26 international researchers who are now launching the survey in 19 countries. The survey has full ethical approval and is entirely anonymous. We want to recruit participants who are 18 years or older and are either (1) a family member of a person of any age who has intellectual and developmental disabilities, or (2) a paid staff member supporting a person or persons of any age who has intellectual and developmental disabilities. By participating in this survey, you and others will assist our understanding of the experiences of individuals with intellectual and developmental disabilities and how this experience compares with participants in other countries.

For more information and to take the survey, click here https://tinyurl.com/COVID19IDD We estimate the survey will take about 25 minutes to complete.

We invite you and/or members of your network to take part in the survey and appreciate any assistance you can provide in disseminating news among your network. We are sending out news on twitter from our UCD_CDS account and you could retweet if you felt this is appropriate. Our twitter handle is #COVID19IDD.

 

Impact of Covid-19 on Individuals with Intellectual and Developmental Disabilities and Caregivers

UCD’s Centre for Disability Studies been awarded funding by the Irish Government to explore the impact of Covid 19 on individuals with intellectual and developmental disabilities and their caregivers. From 350 applications, 26 projects have been funded. Minister Heather Humphries commented ‘"Research, development and innovation will play a significant role in tackling the COVID-19 pandemic. The projects announced today are part of a national drive to find solutions to the challenges we face".

Dr Christine Linehan, Director of the UCD Centre for Disability Studies, leads a team of 14 researchers in nine countries; Professor Christine Bigby, Professor Thilo Kroll, Professor Malcolm MacLachlan, Professor Julie Beadle Brown, Gail Birkbeck, Valerie Bradley, Dr Femmianne Bredewold, Dr Masauso Chirwa, Dr Šárka Kanova, Prof Sudesh Mukhopadhyay, Dr Niki Nearchou, Dr Flavia Santos, Associate Professor Jan Šiška, Prof Jan Tossebro.   

This funding acknowledges that individuals with intellectual and developmental disabilities (IDD) may experience significant and disproportionate distress during a pandemic. Among many disparities with the general population, individuals with IDD are more likely to experience communication difficulties, co-morbid physical and mental health conditions, and inequities in health care access and health promotion.  Analysing key data, the project will identify, for the first time, the impact of a pandemic on the lives of people with IDD.  The project aims to conduct an anonymised online survey of those supporting people with IDD, including family and paid caregivers, across a number of international jurisdictions.

Many of the project partners are members of IASSIDD, the International Association for the Scientific Study of Intellectual and Developmental Disability’s (IASSIDD), the professional association for people working in the intellectual and developmental disability field. Dr Linehan is Chair of IASSIDD’s Comparative Policy and Practice Special Interest Group (CPP). Using these international networks, project partners will contact disability and advocacy organisations worldwide asking that they share the link to the online survey with their members. Caregivers, whether paid staff or family members, who are 18 years or over are encouraged to look out for further details on social media and to participate in the survey.

Dr Christine Linehan commented: "People with intellectual disabilities face specific disadvantage during the pandemic; symptoms may go unnoticed, treatment may be withheld, social distancing measures may result in behaviours that challenge. Our survey aims to capture people's experience so we can use findings to develop policy and practice guidelines for this population." [see video]

 

Forthcoming Conference and Roundtable on Supported Decision Making

A two day event on Supported Decision Making of Persons with Intellectual and Developmental Disabilities is being hosted by IASSIDD’s Comparative Policy and Practice Special Interest Research Group in conjunction with the renowned Tizard Centre at the University of Kent, UK. Prof Julie Beadle-Brown leads this event which comprises a one day conference (Wednesday July 8th 2020) followed by a one day Roundtable (Thursday July 9th 2020) both hosted at the Tizard Centre. This event is preceded by a one day event on Active Support. Information on all events, including registration and fees, is available at this link https://kenthospitality.kent.ac.uk/Register/tizard

IASSIDD July 22020 conference announcement

Poster of IASSIDD July 2020 conference jpg

Appointment to Chair IASSIDD Special Interest Group

Dr Christine Linehan, Director of the UCD Centre for Disability Studies, has been appointed Chair of one of IASSIDD’s Special Interest Research Groups (SIRGs). The Comparative Policy and Practice SIRG now comprises: Dr Christine Linehan as Chair; Prof Chris Bigby as Vice Chair; Prof Michael Brown as Past Chair; Prof Julie Beadle-Brown as Membership Liaison; Prof Jan Šiška and Dr Šárka Káňová as Social Media/Website Representatives; Prof Chris Bigby as Associate Editor for Journal of Policy and Practice in Intellectual Disability; with ordinary members Geraldine Boland, Dr Femmianne Bredewold, Dr Masauso Chirwa, Prof Sudesh Mukhopadhyay, Dr Mary-Ann O’Donovan, Dr Flavia Santos and Prof Jan Tossebro. Further information on the SIRG is available at https://www.iassidd.org/ and @IASSIDD

IASSIDD logo with transparent background

Improvement through Partnership: Promoting collaborative research in community intellectual disability services

UCD Centre for Disability Studies and St Michael’s House celebrated our ten-year partnership on International Disability Day, December 3rd, 2019. The partnership, led by Associate Professor Suzanne Guerin, UCD and Professor Philip Dodd, St Michael’s House, is the first such Memorandum of Understanding between an Irish university and disability service provider. 

 

Group photo

Signed in 2009, the Memorandum formalised a collaborative approach to disability research. Research activities have included service evaluations, student scholarships, biannual research seminars and presentations at international conferences.  Examples of these evaluations included presentations by Dr Kevin Tracy, Clinical Psychologist at St Michael’s House on Men’s Sheds,  Person Centred Planning by Elaine Teague, Director of Quality Improvement and Safety Development and Key-working in Children’s Services by Maria Nolan, Early Services Team Leader & Niamh Giltinen, Clinic Manager for Children's Services. These examples of collaborative research were followed by a keynote address from Professor Angela Hassiotis, Professor of Psychiatry, UCL Centre for Intellectual and Developmental Disability Research. Professor Hassiotis identified areas for collaboration among all stakeholders including academics, disability services and ‘experts by experience’, individuals with disabilities who provide an essential voice in the development of support services. Our congratulations to all involved in this successful initiative and good wishes for another ten years of collaboration.

Side by side photo of Suzi & Philip

Seminar in Assisted Decision Making (Capacity) Act

On November 5th 2019, the UCD Centre for Disability Studies was delighted to host an evening seminar on the Assisted Decision Making (Capacity) Act. Speakers included Patricia Rickard-Clarke, Chair of Safeguarding Ireland and Sage Advocacy; Eileen O’Callaghan, Sage Advocacy; and Emer Meighan, Sage Advocacy. The evening provided an opportunity to outline the Act and take questions on the implications of the Act for those who are supporting individuals with developmental disabilities into adulthood. A copy of the slides presented by Patricia Rickard-Clarke are available here with kind permission

Dr Flavia Santos presents a keynote address at the American Congress of Rehabilitation Medicine

Dr Flavia Santos present at American Congress of Rehabilitation Medicine’s 2019

UCD’s Centre for Disability Studies congratulates our colleague Dr Flavia Santos who delivered a keynote address at the prestigious American Congress of Rehabilitation Medicine’s 2019 conference entitled Progress in Rehabilitation Research - Translation to Clinical Practice. The conference took place in Chicago from 5-8 November. Dr Santos’ paper, Attitudes towards Healthy Ageing in People with Intellectual and Developmental Disabilities, was included in a special symposium on Aging with and into Disability: State of The Science and Rehabilitation Implications. Other contributors included Professors Matthew P. Janicki and Tamar Heller. Congratulations Dr Santos!

Patricia Heyn, Tamar Heller, Emily Nalder and Flavia Santos

Photo names: Patricia Heyn, Tamar Heller, Emily Nalder and Flavia Santos

Successful Discussions in Disability Conference hosted in August 2019 – Youth Mental Health: Break the Stigma

PDFs of Conference presentations

The Centre for Disability Studies was delighted to collaborate with YOULEAD, a doctoral training programme in youth mental health, on our 2019 Discussions in Disability Conference ‘Youth Mental Health: Break the Stigma’.  Hosted in UCD on 30 August 2019, this day-long conference was chaired by Prof Eilis Hennessy, Professor at UCD’s School of Psychology and YOULEAD research supervisor and Dr Christine Linehan, Director of the UCD Centre for Disability Studies. The morning session was opened by Professor Colin Scott, UCD Vice President for Equality, Diversity and Inclusion and Associate Professor Suzanne Guerin, Head of UCD School of Psychology, both of whom extended a warm welcome to all. The conference began with an exploration of the evidence-base and lived experience of youth mental health stigma. Contributions included: Dr Amanda Fitzgerald, UCD, sharing new data from the My World Survey of youth mental health; Prof Eilis Hennessy explaining the nature and impact of stigma; Elliott MacGabhann vividly sharing the lived experience of psychosis; Emer Conneelly, a YOULEAD doctoral candidate examining the representation of young people in mental health service delivery; and Dr Aileen O’Reilly and Youth Advisory Panelist Rachel White discussing Jigsaw’s work, which included a contemporary and thought-provoking rap delivered by Rachel. The morning closed with a lively questions and answers session, much of which was directed to our two invited youth advocates, Elliott and Rachel.

Prof Colin Scott welcome Discussions in Disability YMH stigma 2019

In the afternoon, national campaigns to reduce youth mental health stigma were outlined by: Deirdre McHugh, National Educational Psychological Service, discussing the National Wellbeing Policy for Schools; John Saunders, Shine, who highlighted our use, and misuse, of stigmatising terminology; and Kim Dempsey from Pieta House who outlined Pieta’s Resilience Academy programme. Our day ended with a panel of expert policy advisers and practitioners chaired by Jigsaw founder, and UCD Adjunct Professor, Tony Bates. Panelists comprised Donie O’Shea, National Disability Authority; Sinead Reynolds HSE Mental Health; Rosemary Smyth, Mental Health Commission; Laurence Bond, Irish Human Rights and Equality Commission; and Beatrice Dooley, Institute of Guidance Counsellors. Panelists praised the excellent research and initiatives being undertaken to tackle stigma, noting that the inclusion of young people themselves is central to the ongoing development of quality services in this field.

Discussions in Disability 2019 YMH Stigma Group photo

For twitter reporting on this conference, go to #discussionsindisability

Hats off to our recent graduates on the MSc in Rehabilitation and Disability Studies – Class of 2019 Graduation

The UCD Centre for Disability Studies is delighted to celebrate the graduation of our Class of 2019. Following the graduation ceremony at the O’Reilly Hall on Thursday 5th September, our graduates took time to celebrate by the UCD lake.  Our congratulations to all.

Photo of MSc in Rehabilitation and Disability Studies class of 2019 graduation at UCD lake

GDPR and Capacity to Consent Roundtable

The introduction in 2018 of GDPR (General Data Protection Regulations) and the accompanying Health Research Regulations has required researchers to work in new ways to ensure research participants make an informed decision when consenting to research while being protected against violations of data privacy. Ensuring compliance with these new regulations is complex, and more so where research participants may be deemed to lack capacity to consent. To address this issue, the UCD Centre for Disability Studies hosted a high-level roundtable on July 31st 2019.  Real life cases were discussed across the full spectrum of the research process from the generation of research questions through to dissemination of findings. Proceedings from this event are in preparation. 

UCD GDPR ADM Roundtable Photo of attendees 

Contributors to the roundtable included Christine Linehan, UCD Centre for Disability Studies (Chair); Jonny Barrett, Consent Declaration Committee; Sarah Casey, National Rehabilitation Hospital; Sarah Craig, Health Research Board; Suzanne Guerin, UCD Centre for Disability Studies; Alison Harnett, National Federation of Voluntary Bodies; Peter Lennon, Department of Health; Joanne McCarthy, Disability Federation of Ireland; David Murphy, Data Protection Commission; Suzanne Moloney, HSE Social Care; Patricia Rickard Clarke, SAGE Advocacy; Flavia Santos, UCD Centre for Disability Studies; Fintan Sheerin, Trinity College Dublin; Joan Tiernan, UCD Human Research Ethics Committee; Emily Vereker, Consent Declaration Committee; Brian Waldron, Psychological Society of Ireland.

Discussions in Disability Seminar 2019
Youth Mental Health: Break the Stigma

Registration is now open for our annual Discussions in Disability seminar at www.ucd.ie/alumni/events. Full programme below.

 

Improvement through Partnership: Promoting collaborative research in community intellectual disability services

UCD Centre for Disability Studies and St Michael’s House celebrated our ten-year partnership on International Disability Day, December 3rd, 2019. The partnership, led by Associate Professor Suzanne Guerin, UCD and Professor Philip Dodd, St Michael’s House, is the first such Memorandum of Understanding between an Irish university and disability service provider. 

 

Group photo

Signed in 2009, the Memorandum formalised a collaborative approach to disability research. Research activities have included service evaluations, student scholarships, biannual research seminars and presentations at international conferences.  Examples of these evaluations included presentations by Dr Kevin Tracy, Clinical Psychologist at St Michael’s House on Men’s Sheds,  Person Centred Planning by Elaine Teague, Director of Quality Improvement and Safety Development and Key-working in Children’s Services by Maria Nolan, Early Services Team Leader & Niamh Giltinen, Clinic Manager for Children's Services. These examples of collaborative research were followed by a keynote address from Professor Angela Hassiotis, Professor of Psychiatry, UCL Centre for Intellectual and Developmental Disability Research. Professor Hassiotis identified areas for collaboration among all stakeholders including academics, disability services and ‘experts by experience’, individuals with disabilities who provide an essential voice in the development of support services. Our congratulations to all involved in this successful initiative and good wishes for another ten years of collaboration.

Side by side photo of Suzi & Philip

Launch of WHO and ILAE/IBE’s Global Report ‘Epilepsy: A public health imperative’.

In June 2019, the World Health Organisation, in cooperation with the ILAE (International League against Epilepsy) and IBE (International Bureau for Epilepsy) launched a new global report ‘Epilepsy: a public health imperative’. The report can be accessed on the World Health Organisation (WHO) site at https://www.who.int/mental_health/neurology/epilepsy/report_2019/en/.

WHO state that the report is a call for sustained and coordinated action to ensure that every person with epilepsy has access to the care and treatment they need, and the opportunity to live free from stigma and discrimination in all parts of the world. Christine Linehan, Director of the UCD Centre for Disability Studies, was an invited expert reviewer on this report.

Cover of report

Irish Disability Studies Association Summer Seminar

UCD’s Centre for Disability Studies is delighted to promote the Irish Disability Studies Association’s Summer Seminar on the topic of the Comprehensive Employment Strategy for People with Disabilities 2015-2024. This seminar takes place on May 22nd at 6pm in Room 3104/05, the Arts Building, Trinity College Dublin. The seminar will outline current work finalising the second three-year action plan under the Employment Strategy. A further notice will issue when the speaker line-up has been finalised. The meeting will be preceded by a Committee Meeting at 5pm. Those interested in joining the Committee should attend this meeting.  

UCD Centre for Disability Studies’ epilepsy research represented at International Epilepsy Day, European Parliament

The UCD Centre for Disability Studies is delighted that our research partners, Prof Jakob Christensen and Prof Philippe Ryvlin, will meet with MEPs in the European Parliament, Strasburg to mark International Epilepsy Day 2019.  Profs Christensen and Ryvlin will have an opportunity to present preliminary findings from ESBACE, the European Study of the Burden and Cost of Epilepsy in Europe. The UCD Centre is one of the leading partners in ESBACE, a consortium of 19 European Centres who received 1.2 million euro in funding from the European Commission to examine the burden and cost of epilepsy in Europe. International Epilepsy Day provides a unique opportunity to present our preliminary findings at the heart of Europe. Further details of the event can be accessed here.

 

CDS representation at IASSIDD World Congress this summer

Preparations are underway by the UCD Centre for Disability Studies for our attendance at the IASSIDD World Congress in Glasgow from 6th – 9th August. IASSIDD, the International Association for the Scientific Study of Intellectual and Developmental Disability, is the premier professional association for those working in the disability field. Following from a successful trip to IASSIDD’s European Congress in Athens in 2018, the Centre has once again submitted numerous applications for papers, symposia and roundtables on a variety of topics. Given the Centre’s role on IASSIDD’s Comparative Policy and Practice Special Interest Groups, many of the applications fall within this area, for example applications on living arraignments for persons with complex needs, the relationships between homelessness and developmental disability, and the need for strong leadership in the development of quality services. A symposium is also submitted on epilepsy and intellectual disability which is a long-standing area of research for the Centre. To read more about the conference go to http://www.iassidd2019.com/ We look forward to seeing you in Glasgow!

Acquired Brain Injury Ireland visit the UCD Centre for Disability Studies.

A group of people standing and sitting looking at the camera

The UCD Centre for Disability Studies was delighted to host a seminar with self-advocates and staff from Acquired Brain Injury (ABI) Ireland on Saturday 1st December 2018.  Students on the MSc in Rehabilitation and Disability Studies were in attendance to hear from ABI self-advocates and staff about the impact of an acquired brain injury and the personalised supports promoted by ABI to foster independently living skills. Harley, Ireland’s only second fully-trained hearing support dog, was particularly well-behaved and resisted the temptation of mince pies at lunch time.  Our thanks to all at ABI for a marvellous day.

 

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MSc in Rehabilitation and Disability Studies – Class of 2018 Graduation

MSc Rehabilitation and Disability Studies class of 2018

The UCD Centre for Disability Studies is delighted to celebrate the graduation of our Class of 2018. Following the graduation ceremony at the O’Reilly Hall on Thursday 6th September, our graduates met with Prof Andrew Deeks, President of UCD, for some photographs by the lake.  Our congratulations to all.

UCD Centre for Disability Studies’ Annual Discussions in Disability

Annual Discussions in Disability

Our thanks to all those who supported the UCD Centre for Disability Studies’ 2018 Discussions in Disability seminar which explored Assisted Decision Making. Associate Professor Christine Linehan, Director of the UCD Centre for Disability Studies, opened the seminar to a packed William Fry Theatre with over 100 guests. Professor Colin Scott, UCD Vice President for Equality, Diversity and Inclusion gave a warm welcome and spoke to the tensions between expert concepts of best interest and individual self-determination.

Louise Loughlin, National Manager of the National Advocacy Service (NAS) provided an overview of NAS which can be accessed here. Louise then introduced Pete Jones, a self-advocate who spoke with Patty O’Malley, Pete’s NAS advocate. Pete shared his personal journey of an acquired disability and both Patty and Pete described how major life decisions were broken down into smaller units to assist Pete’s comprehension and decision making at a time of considerable change in his personal and working life.

Aine Flynn, Director of the Decision Support Service, then provided a detailed outline of the newly formed Decision Support Service, the three tiers of decision supporters, enduring power of attorney and advanced health care directives. A copy of Aine’s slides can be accessed here.

 

Following coffee and opportunities for networking, Jacqueline Grogan, Assisted Decision Making Project Manager with the HSE Quality Improvement Team, spoke about assisted decision making from the perspective of health and social care providers. Jacqueline challenged traditional notions of ‘next of kin’, capacity assessment tools, and whether we are ready to ‘say goodbye to best interests’. Jacqueline’s slides are here.

Breda O’Neill, Chief Executive of St Margaret’s Donnybrook, concluded the morning session with a moving personal reflection on three women whose lives were impacted by assisted decision making, most notably the impact of becoming a ward of court where decision making is withdrawn. Breda’s slides can be accessed here.

After lunch, Patricia Rickard Clarke, a recent recipient of an Honorary Doctorate at UCD, delivered a comprehensive presentation on the legislative framework for capacity, consent and safeguarding in Ireland. For a non-legal audience, the presentation was accessible, framed with a human rights perspective and outlined both current legislation and future developments in this field. Patricia’s slides can be accessed here.

Finbarr Colfer, Deputy Chief Inspector of Social Services at HIQA was the final speaker of the day. Finbarr spoke of his personal involvement with disability and outlined the current role of HIQA in monitoring the quality of disability services. Finbarr outlined how a positive risk assessment approach aims to balance risk and autonomy for individuals in receipt of health and social services.

The day ended with a lively discussion session chaired by Christy Lynch, formerly CEO of KARE and recently appointed Adjunct Associate Professor at the UCD Centre for Disability Studies. The discussion was wide-ranging, including reflections on the challenge for family members moving to a more formal decision-making role, the dilemma of supporting decisions that may be deemed “unsound”, and the development of codes of practice to support implementation of the legislation.

We are aware that more individuals than we could cater for expressed an interest in attending this seminar. If you are interested in attending further seminars hosted by the UCD Centre for Disability Studies, please register for our updates on our website at this link. We look forward to welcoming you to our next Discussions in Disability event.

 

UCD Centre for Disability Studies 2018 Discussions in Disability Seminar

CDS Assisted Decision Making August 2018

The UCD Centre for Disability Studies looks forward to welcoming all our guest speakers and delegates to our Discussions in Disability Seminar next Monday, August 27, at the William Fry Theatre, Sutherland School of Law.

 

IDEA (Intellectual Disability: Explorations and Approaches) Conference at NUIG, 5th September 2018

IDEA Poster 2018

The UCD Centre for Disability Studies is delighted to contribute to the IDEA Network’s seminar at NUIG’s Centre for Disability Law and Policy on September 5th. IDEA, Intellectual Disability: Explorations and Approaches, brings together a national and international panel of speakers to discuss legal, historical and current issues relevant to individuals with intellectual disabilities. Registration for this free event is available at https://www.eventbrite.ie/e/idea-network-inaugural-event-tickets-48329489805

5th IASSIDD European Congress report

 

The UCD Centre for Disability Studies was well represented at the 5th IASSIDD European Congress from 18th-20th July in Athens, Greece. IASSIDD is the International Association for the Scientific Study of Intellectual and Developmental Disabilities, the leading professional association for those working in the intellectual and developmental disability field. The UCD Centre for Disability Studies is an executive member on the IASSIDD Special Interest Group on Comparative Policy and Practice (CPP) and was represented at IASSIDD Executive Council meetings throughout the conference.



Associate Professor Christine Linehan, Director of the UCD Centre for Disability Studies, delivered a series of presentations on her research programme in the field of deinstitutionalisation and lead roundtables on deinstitutionalisation policy and practice with our adjunct colleague Prof Julie Beadle-Brown of the Tizard Centre, University of Kent, UK. Christine also delivered a session paper on Disability and Ethnic minority. This session builds on the success of the Centre’s 2017 Discussions in Disability event which explored the intersectionality of disability and ethnicity.

Suzanne Guerin presentation at IASSIDD Athens

Emma Nicholson presentation IASSIDD Athens
   
Associate Professor Suzanne Guerin, Deputy Director of the UCD Centre for Disability Studies, and Post-Doctoral Research Fellow Dr Emma Nicholson, delivered a series of session papers on their research exploring innovative respite options for individuals with disabilities and their families.

Padraic O'hEadhra presentation IASSIDD Athens

Doctoral candidate Padraic O’hEadhra delivered a session paper on living arrangements for older individuals with intellectual disabilities, and more specifically, how quality of life can be appropriately theorized and measured for this cohort of individuals. This question comprises the topic of Padraic’s PhD.

Geraldine Boland presentation IASSIDD Athens
 
Doctoral candidate Geraldine Boland presented the preliminary findings of a systematic review she has undertaken which aims to identify the corpus of research addressing whether adults with intellectual disabilities really belong in their neighbourhoods. This review comprises one component of Geraldine’s doctoral research.

In addition to the opportunity to present some of the many research projects which are currently being undertaken by the staff and students of the UCD Centre for Disability Studies, the IASSIDD 2018 European Congress provided an excellent opportunity to meet new faces and old which may provide even more opportunities for future international collaboration.

Online Registration now open for the UCD Centre for Disability Studies’ seminar on Assisted Decision Making

Registration is now open for the UCD Centre for Disability Studies 2018 seminar on Assisted Decision Making. To access online registration click here.

UCD Centre for Disability Studies is delighted to announce our annual Discussions in Disability seminar for 2018. This year the seminar will address the topic of Assisted Decision Making. The seminar will take place in UCD Belfield campus on Monday 27th August 2018.

Guest speakers include:
Áine Flynn, Director of the Decision Support Service in the Mental Health Commission
Jacqueline Grogan, Assisted Decision Making Project Manager, Quality Improvement Division, HSE Patricia Rickard-Clarke, Solicitor and former Commissioner of the Law Reform Commission Finbarr Colfer, Deputy Chief Inspector of Social Services, HIQA

Scholarship: full fee support for access students with economic need

The College of Social Sciences and Law are offering scholarships for full fee support to one access student with economic need on a taught postgraduate programme in each of the College’s Schools for entry in 2018/2019.

Criteria

Open to incoming students

Be an Irish/EU Applicant

And

Satisfy the normal academic entry requirements of the programme and have been offered & accepted a place on a taught graduate programme in the UCD College of Social Sciences and Law

And

Be from one of the under-represented groups at higher education including;

  • Have previously entered third level education or were supported by a recognised Access Programme
  • Student from a low income/ Means tested social welfare payment
  • Low income first time mature student
  • Lone parent
  • Student with a disability from a low income family
  • Asylum seeker, Refugee, Leave to remain

And

Complete the on-line scholarship application.

Application Process
On-line application via the current system for Access & Lifelong Learning Cothrom Ne Féinne Scholarships – strand for support for College of Social Sciences & Law Graduate taught programmes

Scholarship Application form

Covers the following points

  • Personal circumstances/ Educational barriers faced
  • Why you are seeking this scholarship
  • How the scholarship will benefit you
  • Please outline your career plans
  • Were you in receipt of the SUSI grant?
  • Have you received any scholarships for your undergraduate degree?

Supporting Documents

- Letter confirming supported by an Access Programme/Office

or

- P21/Social Welfare Statement for the year processing entry

Timeframe
Closing date: 3 rd August 2018
Assessment of applications: week 13 th August 2018

Terms and Conditions of support

  • The scholarship entitles the student to full fee support for each year of a taught graduate programme in the UCD College of Social Sciences and Law
  • Award of this scholarship will not affect entitlement to the Student Grant administered by SUSI. Students who are awarded scholarships are required to pay any fees due to the University. Failure to do so may result in the withdrawal of the scholarship.
  • Scholarships cannot be deferred.
  • If a student has to repeat a stage, the scholarship will be suspended for that year and will resume once the student progresses. Academic performance will be monitored and support provided.
  • Applicants may be asked to provide evidence for statements/financial information provided in this application.

You may be aware that the General Data Protection Regulations (GDPR) are changing today (25th May 2018).
The UCD Centre for Disability Studies has adopted an opt-in approach for people to receive our communications.

IF you would like to continue to receive information about our disability-related seminars, research activities, and our degree programmes, please click on the Update Your Details button on the right.

We will include an 'unsubscribe' option on any future communications.

Christine Linehan PhD
Associate Professor, UCD School of Psychology
Director, UCD Centre for Disability Studies

Applications are welcome for the final places available on the MSc in Rehabilitation and Disability Studies at UCD for entry in September 2018. Delivered by the UCD Centre for Disability Studies in the UCD School of Psychology, the MSc is an advanced qualification for those working or volunteering in the disability field. The programme encourages students to develop a deep appreciation and understanding of legislation, policy and person-centred evidence-based practice. Promoting an interactive learning environment, students engage with academics, practitioners working in the disability field, and people with lived experience  of disability. Teaching approaches are varied and include expert tuition, small group interaction, peer support,and autonomous student learning.

Apply now via www.ucd.ie/courses/MSc-Disability-Rehabilitation-Studies

The UCD Centre for Disability Studies was delighted to support the Dublin Region Homeless Executive to host an “Intellectual Disability Awareness Session for Homeless Services Staff” on 27 November 2017. Chaired by Associate Professor Christine Linehan, Director of the UCD Centre for Disability Studies, the seminar sought to give voice to the growing number of individuals with intellectual disability and their families who are experiencing homelessness.  Self-advocates Bernadette Finnegan, Darren Smith and Parent-advocate Mary Alok Akot vividly described their journeys out of homelessness. Laura Barragry from Cheeverstown House, Emer Lynch from the Daughters of Charity and Breda O’Neill from St Margaret’s Donnybrook described the need for those supporting individuals in homelessness to exercise dignity, respect and understanding. Over 60 delegates attended, including staff at Peter McVerry Trust, Focus Ireland and Crosscare with many commenting on the usefulness of this seminar in promoting appropriate supports to individuals with intellectual disabilities who experience homelessness. Our thanks to Cormac O’Donnell and Maria Fitzpatrick of Dublin Region Homeless Executive for spearheading this seminar.

Photo: Breda O’Neill, St Margaret’s; Laura Barragry, Cheeverstown House; Bernadette Finnegan Self-advocate; Sandra Keenan, St Margaret’s; Darren Smith Self-advocate; Christine Linehan, UCD Centre for Disability Studies; Emer Lynch, Daughters of Charity; Cormac O’Donnell, Dublin Region Homeless Executive; & Mary Alok Akot, Parent Advocate. 

 

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