The power of families of persons with profound intellectual and multiple disabilities

Session Recordings

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Program – 3 March 2022

Central European Time

0900

Welcome

Bea Maes, Chair SIRG PIMD

09:10 – 10:10

Panel discussion with family members:

‘How can the strengths of family members of persons with PIMD be better highlighted’? ‘What are their expectations towards professionals and researchers’?

Moderators:

Annie Fergusson and Michael Arthur Kelly

Panel members:

Marlene Le Roux (S-Africa), Katrien Vaes (Belgium), Eva Lundström Wolke (Sweden), Nicole van den Dries-Luitwieler (The Netherlands)

10:15 – 11:00

Keynote presentation:

The importance, and the fragility of parents’ roles in the care and support for their child with PIMD

Kasper Kruithof (Amsterdam UMC, Department of Ethics, Law & Humanities)

11:05 – 12:45

Presentations of research projects and good service practices:

Self-directed care budgets and their impact on the family

Peter Glick (University of Newcastle, UK)

Family carers of adults with profound and multiple learning disabilities and the COVID-19 pandemic: Results from a UK-wide survey

Jill Bradshaw (University of Kent, UK)

You, Me, Our Family: Exploring family patterns of interaction in young children with a significant cognitive and motor developmental delay

Ines Van keer (KU Leuven, Belgium)

Communicating with persons with severe/profound intellectual disability through augmentative and alternative communication: Acknowledgement of family members roles and responsibilities

Edina Hanley (University College Cork, Ireland)

Community participation of families of children with PIMD in South Africa

Callista Kahonde (Cape Town, South-Africa)

12:45 – 13:10

Break with short videos of parents’ organisations

Swedish Care Competence Centre, Magenta-Belgium, PAMIS-Scotland

PAMIS-Scotland Videos:

13:10 – 13:55

Keynote presentation:

Understanding and strengthening the family system of children with PIMD: what is known and still to be found out?

Jorien Luijkx (University of Groningen)

14:00 – 15:20

Presentations of research projects and/or good service practices:

Parental support of friendship and social interactions for children with complex support needs during a global pandemic

Jorden Morales (University of New Mexico, US)

Experiences of parents caring for young people with PMLD during the transition years to adulthood: A poetic synthesis

Katherine Slade (Aston University, UK)

Reconciling communication repertoires: Navigating interactions involving persons with severe/profound intellectual disability, a classic grounded theory study

Anne-Marie Martin (University College of Cork, Ireland)

Caring for children with profound intellectual and multiple disabilities: Images and metaphors expressed by Dutch parents

Liesbeth Geuze (Haagse Hogeschool, The Netherlands)

15:25 – 16:10

Panel discussion with parents and researchers:

The way forward for research and practice

Moderator:

Annette Van der Putten

Panel members:

Peter Glick (UK), Ines Van keer (Belgium), Jorien Luijkx (the Netherlands), Krysti de Zonia (US) and Patricia Graham (Scotland)

16:10 – 16:15

Acknowledgements and closing

Time zones

CET (+1) GMT (+0) AEDT (+11) SAST (+2) CST (+8) PST        (-8) EST    (-5)  
9.00 8.00 19.00 10.00 16.00 00.00 03.00 Welcome
9.10 – 10.10 8.10-9.10 19.10-20.10 10.10-11.10 16.10-17.10 00.10-01.10 03.10-04.10 Panel discussion with family members
10.15- 11.00 9.15-10.00 20.15-21.00 11.15-12.00 17.15-18.00 01.15-02.00 04.15-05.00 Keynote Kasper Kruithof
11.05-12.45 10.05-11.45 21.05-22.45 12.05-13.45 18.05-19.45 02.05-03.45 05.05-06.45 Presentations of research projects and good service practices
12.45-13.10 11.45-12.10 22.45-23.10 13.45-14.10 19.45-20.10 03.45-04.10 06.45-07.10 Videos of parents’ organisations
13.10-13.55 12.10-12.55 23.10-23.55 14.10-14.55 20.10-20.55 04.10-04.55 07.10-07.55 Keynote Jorien Luijkx
14.00-15.20 13.00-14.20 24.00-01.20 15.00-16.20 21.00-22.20 05.00-06.20 08.00-09.20 Presentations of research projects and/or good service practices
15.25-16.10 14.25-15.10 01.25-02.10 16.25-17.10 22.25-23.10 06.25-07.10 09.25-10.10 Panel discussion with parents and researchers- The way forward for research and practice
16.10-16.15 15.10-15.15 02.10-02.15 17.10-17.15 23.10-23.15 07.10-07.15 10.10-10.15 Acknowledgements and closing

 

CET: Central European Time

GMT: Greenwich Mean Time

AEDT: Australian Eastern Daylight Time

SAST: South Africa Standard Time

CST: China Standard Time

PST: Pacific Standard Time

EST: Eastern Standard Time

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