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Caregiving Symposium

Caregiving capacity and contemporary Irish family life: learning from the experiences of families and older people with an intellectual disability

Date: Tuesday 11 April 2017
Time: 14.30 - 17.00
Venue: Regent House
This free event is open to the public, please RSVP to Darren McCausland to reserve your place (dmccaus@tcd.ie)

The increased life expectancy of people with an intellectual disability is a success story.  Families are the predominant providers of caregiving support for people with an intellectual disability in Ireland, even more-so in the context of contemporary ‘post-institutional’ Irish society.  However, the social demographic structure of Irish families has changed radically, and as people with an intellectual disability age so too do their families, making family caregiving more difficult and complex.  This symposium / conversation will provide an opportunity to learn from and consider the caregiving capacity of parent and sibling carers for their ageing family member within this changing environment.

Six short presentations will be given highlighting key issues that impact on caregiving within families.  This will included contributions from leading academics examining this aspect of family life, NGO advocates, family carers and older people with an intellectual disability.  Each presentation will be followed by 10 min small group discussions.  It is hoped that this format will facilitate shared learning between people with an intellectual disability, family care-givers, advocates, NGOs, academics, service providers and policy makers.

Chair: Dr Damien Brennan
Welcome: Prof Mary McCarron, Dean of Faculty of Health Sciences

 

Title

Presenter

1

An overview of family in contemporary Ireland

Dr David Ralph

2

Irish ID social policy and the contemporary family

Dr Mary-Ann O'Donovan

3

Present and future sustainability of family care giving

Dr Damien Brennan

4

What is a carer?

Maureen D'Eath

5

The experience of having an intellectual disability and living with an extended family in adulthood

Michael Gannon

6

Overcoming the barriers to sustainable care giving

Mark O’Connor, Inclusion Ireland

7

Feedback session – learning from the conversations

Chair: Dr Damien Brennan

Dr David Ralph is Assistant Professor of Sociology in Trinity College Dublin where he teaches courses on the sociology of migration and the sociology of the family. He has published widely in both these areas. His latest publication (with Jane Gray and Ruth Geraghty) is Family Rhythms: The Changing Texture of Family Life in Ireland (2016, Manchester University Press).

Dr Mary-Ann O'Donovan is currently the project manager of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) based in Trinity College Dublin, Mary-Ann is an alumnus of the HRB SPHERE programme. Mary-Ann completed her PhD in Health Services Research and Population Health Sciences in the Royal College of Surgeons Ireland in 2015, focusing on the health and housing needs of older people with an intellectual disability. Previous work experience includes management of the National Physical and Sensory Disability Database (NPSDD) in the Health Research Board, research officer in the National Disability Authority and the Rehab Group. Particular research interests include key life transitions, housing mobility, health service utilization and access, choice and self-determination as well as policy analysis.

Dr Damien Brennan is Assistant Professor at the School of Nursing and Midwifery, Trinity College Dublin where his teaching and research are focused on the Sociology of Health and Illness.  He is a member of the IDS-Tilda research team and is Principal Investigator of an NDA funded study and an IRC funded study which examine intellectual disability and care capacity within family home settings.

Maureen D’Eath is a Health Services researcher currently working in the Health Behaviour Change Research Group in the School of Psychology in the National University of Ireland Galway. She also teaches in NUIG at both undergraduate and postgraduate level. Maureen has previously worked in Trinity College Dublin and the Royal College of Surgeons in Ireland. Her academic background includes degrees in Law, in Politics and in Research Methods and she is currently a PhD candidate in the School of Nursing and Midwifery in TCD. Her PhD thesis is focussing on longitudinal data provided by the carer participants in the IDS-TILDA Study. Maureen has been a member of the Board of Directors of Enable Ireland, representing the perspective of parents and family members of service users, since 1999. Much of her research has focussed issues concerning the lives and experiences of people with disability. Her other research interests include carers and caregiving, cardiac rehabilitation, participatory research and qualitative methodologies.

Michael Gannon is a young man with Down syndrome.  He was born in 1980 and became one of the first participants in mainstream education in the country. He lives in Newbridge, Co Kildare with his parents. Michael completed three years on the Inclusive Learning Initiative (ILI) Course at the National University of Ireland, Maynooth, graduating with a Certificate in Personal Learning, Media Studies.  In January 2014 Michael spent two weeks as an intern in the English Department of Vatican Radio, Rome. Michael regularly presents to medical students at Tallaght Hospital and at University College Dublin.  He is a member of Newbridge Pantomime Group and the Newbridge Musical Society. He has appeared on the Afternoon Show in RTE as an occasional reporter. In 2013 he published his book called Straight Up, No Sugar.

Mark O’Connor has worked with Inclusion Ireland for the last five years and leads out on their advocacy work. Inclusion Ireland is the national association for people with intellectual disabilities in Ireland. Mark is married with three sons, the youngest of whom has autism and an intellectual disability. For the past 14 years Mark has been a strong advocate for the rights of people with disabilities, their care givers and supporters in a professional role and on a personal basis. His interests include the education of people with disabilities, the provision of speech and language therapy, de-institutionalisation, autism and family supports. At present there are plans for people to move from large residential centres to ordinary houses in the community; Mark works with a small team that supports families to be informed and be a part of this process.